Chronic pain and invisible illness can be incredibly isolating, sometimes in obvious ways but other times, it’s far more insidious or subtle. Just as our pain and symptoms are mostly invisible, we too can feel as if we’re living behind a silent divide, isolated from life by an invisible window of pain. When pain never pauses, it can make it hard to feel connected—even to those we love.
As erratic and unpredictable symptoms can alter and affect friendships and relationships, you may see your friends and family far less, or when you do, feel disconnected — lonely in a crowded room — and quite unlike how things once were, which leads to a different kind of loneliness.
“Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness,” says David Biro, M.D., Ph.D., author of Listening to Pain: Finding Words, Compassion, and Relief. “This under appreciated feature — to that outsider, that is — is especially true for pain that persists, chronic versus acute pain.”
Why Chronic Pain is So Lonely
From being isolated in our moment-to-moment pain experience — which is so far removed from that of a healthy person and frequently misunderstood — to feeling detached from the ‘living’ part of life because of our physical limitations and disability. The overwhelming nature of chronic illness and pain coupled with isolation can swiftly turn into loneliness.
“A huge part of illness is isolation,” says Wayne Connell, the founder and president of the Invisible Disabilities® Association. This isolation is magnified because of the pain, and its own essential management; because of the search for things that might help, and the heartache when they don’t; because of the unpredictable flares that disrupt what slender life remains; and of course the because of seemingly endless losses, fears, and anxieties that whirl in our minds.
Turning Inward—Withdrawing from the World
When feeling so detached, distanced, and cut-off from even those we love the most, we may withdraw from the world in an effort to cope, further isolating ourselves. “Pain inverts our normal perspective,” says David Biro.
“Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”
It’s natural to feel a level of disconnection when your experience is so vastly different from all those around you. It’s a self-protective means of responding to the challenges you face in living with complex illness and chronic pain.
“When chronic pain gets severe, many patients withdraw, sometimes even from their families,” says mass media fellow and writer Eleanor Nelsen, whose sister Sally has chronic pain. “Sally says that she’s constantly nervous, afraid to accept invitations or do things that she loves—like riding horses—in case it makes her arm even worse.”
Distance from Disbelief
Breaking a limb or recovering from a surgical procedure may isolate someone for a few weeks but once recovered, life returns in its full unaltered splendour. It’s also far easier for others to accept this as ‘illness’ or ‘injury’. It’s only when the pain persists, and we don’t improve that the great divide of disbelief which invisible illness brings comes into full effect.
The longer that process, the greater the difficulty in reintegrating yourself into a world that has little concept of what you are truly going through, much less how to connect with you now because of your chronic pain and illness. When we are judged or our illness questioned by even those close to us, it creates another kind of isolation — that of being so misunderstood.
It’s not that they need know exactly what we’re going through — we don’t want pity, only understanding — but if a divide of doubt widens, and our relations perhaps distance themselves, this magnifies the loneliness. On many levels it’s understandable, after all, without direct experience, of course others cannot comprehend but without any comprehension, the gap of isolation further increases as those who are reluctant to understand are let go of or simply slip away.
Feeling Lonely in a Crowded Room
Pain can be a lonely experience even in company. “While the pain inside looms so large for the person experiencing it, it is often invisible to the person viewing it from the outside, a doctor, a spouse, or a friend. And when there is nothing to see on the surface, in the case of migraine or neuropathic pain, the doubt only increases,” says David Biro.
“Even if the outsider believes the sufferer, it is difficult for him or her to imagine what it’s like or how severe it is (how easily the pain-free forget past pains). When you combine a sufferer who sees only his pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. A great wall has suddenly sprung up.”
This of course further displaces us from day-to-day living and normal life, in turn magnifying the isolation but that can become painful too. Even when in the finest company in the world, we are always behind pain’s invisible window, which creates its own kind of isolation and loneliness. That of being lonely even in a crowded room.
“Clearly, isolation is never a good thing for long periods of time but I understand why people isolate themselves during their darkest hours of chronic pain,” says chronic pain patient and advocate, Jessica Martin. “I remember thinking: what is worse being alone and in pain or being around people but feeling totally alone?”
Isolation Through the Stress of Constant Pain
When isolated and in pain, our mind is often our own worst enemy, especially when bottling up how we really are feeling both physically and mentally. When pain becomes chronic, with no clear end in sight, it is immensely psychologically debilitating in way that few other conditions are, while being entirely unsharable.
“In fact, it’s often the most debilitating component of many diseases,” says Yves De Koninck, professor of neuroscience at Université Laval, Canada. “People can find a way to live with the other challenges of painful conditions like arthritis, cancer, even paralysis but if you actually ask the patient, their number-one concern, the one thing that they want us to cure, is the pain.”
Relentless pain is stressful, exhausting, and incredibly isolating. “When we appreciate this essential feature of pain – that the loneliness can hurt as much as the “burning” or “stabbing” quality, and that the longer it persists, the worse the entire pain experience becomes — we must recognise that there is more to do than surgery or analgesics,” adds David Biro.
“Patients tend to express that they have lost their sense of direction to life. They are stuck. These problems cause stress,” says Murray J. McAllister, PsyD, executive director of the Institute for Chronic Pain. “These stressors can make pain worse because stress affects the nervous system. It makes the nervous system more reactive and you become ‘nervous.’ Chronic pain causes stressful problems, which, in turn, cause stress that makes the pain worse.”
Isolation Through Changing Roles
Another way that pain can become isolating — and also cause us guilt — is through the changing roles that it brings. It’s heartbreaking not being able to be who we are, express who we are, much less care for and love those around us how we once did before the pain. Aside from feeling like we’re a burden or letting others down, it’s immensely isolating being unable to live a normal life.
“Chronic pain can affect the roles people have. They miss out on children’s activities, family functions, and parties with friends,” says Murray J. McAllister. “As a result, many people struggle with guilt. Guilt isn’t the only emotion that is common to living with chronic pain. Patients tend to report a combination of fear, irritability, anxiety and depression.”
Isolation From Physical Limitations
Of course our isolation wouldn’t be so great were we able to get out, and see others more but many with chronic pain have chronic illnesses with long lists of coexisting symptoms, which further magnify the complications. Temperature sensitivity for instance can make weather that is cool to a healthy person, painfully cold to a pain patient.
Another reason we may not be able to go out is that it is simply too painful before, during, and afterwards, particularly with conditions that cause allodynic pain, and hyperalgesia, including CRPS. At its worst, it can mean being entirely unable wear clothes because of the pain of them touching the skin.
Noise, lights, even people walking past causes a surge in intensity of the pain of chronic conditions with central sensitisation, inclthat takes a long time to return to ‘normal’ pain levels. If outside, even a breeze can be excruciating. “For some it is difficult to get out of the house,” says pain patient and advocate Tracy Rydzy.
“I am able to go to the gym for physical therapy, I can spend time with friends and family, but like most, my time is limited. My back has a time limit for standing, sitting, walking, so things like travel, or a long event are difficult.” No matter the cause of the pain, unless we use pacing and manage it, especially if going out, it can also result in a painful flare, which makes it all the harder to deal with if every event ends like this.
“Sometimes being with others is wonderful but then the recovery is painful and can perpetuate the cycle of depression, isolation and loneliness,” says Tracy Rydzy. “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.
Other complicated and severe neurological reactions if exposed to the chemicals in perfumes for instance, can cause people living with Multiple Chemical Sensitivities (MCS), or Toxic Encephalopathy, migraines, vertigo, pain, memory loss, and a worsening of the reactivity of the condition with each reaction. This naturally leads to more time spent cut-off from the world.
The Loneliness of Letting Go of Who We Used to Be
When pain becomes chronic, and progresses, it can feel as if our slender grip on life has loosened, and with it, our ability to be who we are. This divide only increases the more we focus on the ‘former’ us or compare it with what we can do now but because that in itself becomes its own source of sadness. It’s easy to feel like pain and illness defines us, especially when it affects everything in life.
Letting go of who we used to be, or rather, letting go of expressing who we are in the way we used to, and finding new ways to do what we love in spite of chronic pain is healing. It may not help the sadness but acceptance of what is can be a useful tool in itself. It’s already hard enough living in pain. Try not to default to unhelpful thinking, which only serves to make you feel worse, and even more isolated.
“As the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer Ph.D., author of Isolated and Alone: Therapeutic Interventions for Loneliness, and psychologist specialising in grief and loss.
The Loneliness of Always Hiding Our Pain
The very nature of pain is to get our attention. To say that there’s danger, injury, something wrong, and consequently the idea of attempting to ignore that signal, which seems to then grow all the louder for it, and to continue as if there is no danger, as if there’s no pain, is a very natural response to what is essentially, almost impossible.
It’s human nature to react to pain. Yet when we are in company, we are presented with another challenge, that is, going against our own instinctive nature. This also creates isolation and internal tension because of the invisible divide. We may become so used to hiding this pain that even when we do need show it — in the doctor’s surgery for instance — it’s almost impossible to truly convey.
With our loved-ones too, we hide the true extent and depth of the pain. After all, no one likes to see someone they truly care about in pain but this can widen the gap of both understanding, and isolation too. We may long to do things with our friends or family but pay so dearly later if we pretend things are not as severe as they actually are in an effort to join them.
Anxiety, Fear & Chronic Pain
It’s natural to feel anxious or nervous before events or any action that may, or indeed will, cause you increased pain but sometimes the fear of pain actually creates pain. If I’m about to make a trip, whether to a doctor or a longer journey, I know it will flare-up the pain during and after, perhaps for days so anxiety swiftly appears. Then, because of increased tension both physically and emotionally, the pain ironically goes up long before the event.
When you know the world to be a very painful place, with you at the mercy of such whims as that of the weather instantly worsening your pain, people who disbelieve you and cause additional stress, or the most seemingly innocuous things, which are intense triggers for your pain, it becomes all the more understandable why anxiety or fear appears.
Someone knocking into you for example, may be gentle and swiftly forgotten by a healthy person but if you have a severe pain condition which has sensitised your body and centralised your pain, a simple knock can cause a flare-up of chronic pain. It’s little wonder we can sometimes feel fearful or anxious.
“Hyperalgesia is often a major component of chronic pain. It means that people with chronic pain have to be unceasingly alert,” says Eleanor Nelsen. “Sally says, before she hurt her arm, hot coffee sloshing onto her hand might have hurt for a few seconds. Now, a careless moment like that means days of burning pain.” When pain reacts in such a way, it strongly suggests that changes in the nervous system have migrated to the spinal cord, leading to central sensitisation.
Isolation & Depression
Isolation and loneliness can also lead to depression, or worsen existing depression, making finding support all the more vital. On your own it can be difficult to keep perspective — especially when alone with your thoughts — which can naturally magnify in solitude, especially when combined with the distress of chronic illness and pain when it has so drastically shrunken your life.
Yet the nature of depression can make it difficult to reach out. Sometimes even just the thought of doing so, even to close family and friends, can feel overwhelming. You may have always been ‘strong’ so asking for help just doesn’t come naturally. You may even feel ashamed to need help, even though you live with debilitating pain and chronic illness and there is nothing to feel ashamed for.
You may also feel too fuzzy from medication and brain fog, too exhausted, or too pained-up to talk, much less reach out; it may have been so long that you feel guilty for neglecting a friendship, regardless of this being due to circumstances far beyond your control. Remind yourself that this is depression speaking, not you.
Those who love you generally want to help but often have little idea on how. It’s also worth noting that we are so frequently hardest on ourselves. Try to speak to yourself as if you were your friend going through this. Ensuring it’s in a self-compassionate voice, and be supportive to yourself instead of internalising anger, or focusing on the losses and pain.
For tips on using pain psychology to help you feel less isolated, read more here: How to Use Pain Psychology to Reduce Depression, Anger & Guilt; Tools to Cope With the Stress of Chronic Pain & Manage Difficult Thinking
Chronic Illness is a Full-Time Job
Aside from the unpredictability of chronic illness, another reason we are isolated is as we have such slender limitations of time during which we can get out and see others. It is not only the pain or symptoms themselves but the management of it. A phrase that is popular at the moment is that ‘everyone has the same 24 hours in their day’, which is simply not true for those with chronic pain and illness.
If we do not manage our pain, pace, and use everything that works for us personally, we flare-up, leaving even less time for the ‘living’ part of life. “There is nothing wrong with putting yourself first. Accepting and managing chronic pain naturally is a full time job. I had a planner for each day which included every tool I would need to utilize in my day to day life to manage pain naturally,” says Jessica Martin.
“You cannot help anyone else until you are able to help yourself. You cannot truly love others if you do not love yourself. Stop feeling guilty for putting your well being before the well being of others.” Managing your chronic illness and pain is not selfish, it’s essential, and unless you do, it will manage you all the more.
Reconnecting with Loved-Ones
Even though I’m a complete introvert, ever-content in solitude, when there is little or no contact with others, for example during winter when the pain is its most fierce, making the chances of getting out or connecting with others all the more slender, that isolation becomes its own source of pain, and I imagine, for extroverted pain princesses and warriors too, that pain of isolation, all the greater.
You may have retreated from even your most treasured relationships but reconnecting with loved ones, and being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.
Creative Connecting: 8 Ways to Reconnect with Chronic Pain
Try to ensure you connect with others, even if it’s on Skype or FaceTime, even if it’s just one person in a day. Making just teeny connections on a daily basis goes a long way in making you feel less isolated.
Make small but regular connections with others every day, even if it’s just a text or message via Facebook, WhatsApp, Twitter. Use email, text,social media, and any other means to just stay in touch.
Instead of only turning down every social activity because they’re beyond your physical abilities, talk to those you care for, and see if you can arrange social activities that you can do on the better days — it may help to make a list — so you can still see loved-ones, even it’s only for a short amount of time.
Watching a film with a friend from your bed or living room for example; or going out with a whole lot of cushions, supports, heat pads, and whatever else you need to be able to enjoy a little time outside.
Perhaps you love theatre but haven’t been able to go in years. See if you can attend a play in two parts if that would help you, or ask the theatre if you can lie down during the interval. If they can accommodate you, and you explain your situation, this risk in reaching out may give you an outing with a friend or few that you’d long-since concluded as impossible but unless you ask, you won’t get.
You may need to get creative, and always plan ahead.
If that’s far too grand a plan, it may be a matter of changing the time of day when you connect with a friend or relation to a time when your pain and symptoms tend to be less fierce, or reducing the amount of time you’ll be with someone or out to something more realistic.
Although not strictly connecting with others, music has the power to lift your spirits, help you cope with chronic pain, and the ability to make you feel less lonely or isolated. If you cannot connect, find a little comfort in listening to music.
Know That You’re Not Alone
“Simply listening can help by showing that there is someone who hears you, that you are not alone,” says David Biro. David goes onto say that in our relations with others, making our pain experience more sharable can help us feel less isolated as well as deepen the understanding of loved-ones.
“Better yet, figure out ways to make pain more communicable and sharable — through words or pictures or whatever other kinds of language can be summoned for the task — so that person on the other side of the wall is not only present but actually begins to understand what you are feeling. In this sense language can be as soothing as our most powerful medicines.”
- Join an Online Support Group — If like so many with invisible illness and pain, your relationships are negatively affected, consider joining a community who understands what you are going through. Support groups validate your feelings, letting you know that you are not alone, and with so many online, you can connect even if hugely limited by pain. You can also use your experience and expertise to help others and make new friends.
- Talk to a Therapist — Sometimes when it all gets too much it can be easier for us to unburden ourselves with strangers rather than those closest to us. Though it’s obviously far from free, even a a few sessions with a psychologist or therapist who understands the all-pervading nature chronic pain has on your life, can bring both comfort and coping skills. Even if you’re housebound, many therapists offer sessions via Skype or FaceTime. Look for a therapist who specialises in helping patients with chronic pain.
It’s easy to feel like the rest of the world doesn’t understand how isolated or limited we are, especially when living with a complex chronic pain condition that’s as debilitating as it is mystifying. Yet there are so many of us in pain, our journeys may be isolated but we’re united by our courageous community.
Put Your Health First [Especially If Others Don’t Understand]
“Even now, there are days that can go by that I truly have to just shut the outside world out. Sometimes I fall off track with my chronic pain management and forget to meditate or practice many of the tools I need to survive a happy life. Sometimes, I just need time to be alone because I too go through rough times,” says Jessica Martin.
I had a friend who would only want to catch up if it were a mammoth session, hours of talking, which is naturally exhausting when you’re in a ton of pain. As I flared-up after each visit, this became unmanageable. If you have a friend who refuses to accept your limitations, it’s heartbreaking but you have to put your health first. Even if at first they do not understand it, if they are true friends, it should not matter.
“It took me way too many years to understand the fact that I had to put my health and chronic pain management first,” says Jessica Martin. “I always wanted to please others but that always backfired too. If you need a break from the outside world and madness do not feel guilty. No one asks for chronic pain and no one gets flowers for chronic pain. Give yourself some flowers and put yourself first: greatest gift you will ever receive.”
How do you manage the isolating aspects of living with chronic pain & illness? Share your thoughts in the comments below or in the Guest Book. ♥
Sign-up to the Princess Post for your free Flare-Up Toolkit here:
Read more on chronic pain & loneliness here:
no one gets flowers for chronic pain
Why Pain is so Lonely | Living with Chronic Pain
The Loneliness of Pain | Psychology Today
Teaching the Nervous System to Forget Chronic Pain — NOVA Next | PBS
The Loneliness of Illness and Pain | Disability.Blog
Patricia Morris says
Excellent article and unfortunately all too true. As my illnesses & pain increased to the point of disability friends and family quietly disappeared. My only sources of real social interaction are church and my padtorate.
So pleased you enjoyed it, Patricia, and though your story echoes that of so many in pain, it’s comforting to know you are still connected to others. Sometimes new friends and loved ones appear even in such tricky circumstance and completely unexpectedly too. Wishing you far better days. Gentle hug ♥ x
Julie Foster says
This is the first article to make me feel like someone gets it and understands. That the isolation and loneliness and many other things are not because I’m crazy. Living with a back injury and nerve damage that I could of never in my worst nightmare imagined has changed me so much. With an extremely active and on the go family, I feel isolated and alone while watching them all live. Thank you for the wonderful read ❤️
You’re so welcome, Julie, and thank you for your kind words. It’s such an unimaginable situation until the direct experience of it, which we’d never wish on a soul, and that truly creates isolation and loneliness, even in company, no, especially in company when surrounded by active family & friends who are doing things you once so loved. I think this quote & image is so apt for these times: “It is not the strength of the body that counts, but the strength of the spirit.” ~ J.R.R. Tolkien Truly hope you find comfort and some peace despite the pain. ♥ x
I understand more than you will ever know. Too much chronic pain in my home.
I feel like this article was meant to be me. I struggle with chronic pain, depression, anxiety and for the fist time felt understood. It is such a lonely , lost feeling of uncontrol and despair. I Love my son and husband more than words could ever express. My husband is threatening to leave me if I don’t change and doesn’t know why I can’t just change. So any information. Tha you could orovide would be so thankful. He told me today “what’s wrong with you it’s not that hard you just need to change my thinking.” He just doesnt understand it’s not that easy for mez. I am hoping if you would be so kind to help give some information about help support and give me coping tools to manage this terrible diagnosis. I’m scared and alone and would really appreciate any suggestions for support groups and therapists that deal with chronic pain depression and anxiety. This is my first time I am asking for help and support so please no negative comments. Even if you have suggestions that miighr help manage my conditions would mean the world to me. I need help and I don’t know where to start. I would prefer being able to facilitate these sessions online if possible. Kindly tears rolling hopping for some kind words or encourage mention. My husband just asks me what’s wrong with me on??just change but it’s not easy. So maybe even suggestions about how to explain this to your spouse. It’s not so easy when u have neurotransmitter not working properly.
Hi Kristine, I hear you. What you’re experiencing is a natural human reaction to such overwhelming loss, though of course that doesn’t make it easier. Try to be kind to yourself, pain is complex and hard enough. For resources and info, browse the site but more specifically, for tools to cope with: anxiety, depression, also see this guide to coping psychologically and this post on weathering the storm; also in response to the disbelief, this post and also When Pain Affects Relationships. Truly hope this helps. I wish I could respond more fully. Joining our Facebook community for pain support and also the many FB groups which can be lifelines. Also if you are on Twitter, the #spoonie community is a wonderful one, all with the depth of undertsanding that can only come with direct experience. Gentle hug x
My partner walked out a year ago leaving me to care for our toddler and my other 2 children alone after a terrible diagnosis and 10 years of medical negligence leading to massive spinal cord I jury and needING bags for my toileting needs (catheter and colostmy) he said he left “because I was unbearable” and “he couldn’t cope with my depression “. Our child doesn’t go to school because I cannot take her and he doesn’t care. At first I was devastated to know after all I’d stood by him through the FIRST time I needed him he left. Now I see he did the best thing he could have for me. Dealing with HIS perceived “torment at my diagnosis” was what drove me so deep into this depression in the first place.. he demanded I put HIS needs before my own suffering CONSTANTLY calling me names and physically abusing me because I was vulnerable. I thought I needed him because I was alone. I needed support not someone adding to my pain. It was never ME that needed to change. That was a VERY hard fact to accept but I know now it IS a fact. despite the guilt I still feel because I cannot do for my children what I used to my days ARE easier without his selfishness and constant grumpy attitude. Please understand WE cannot control our pain NOR how we react to it. Our partner DOES have that control when it comes to understanding and showing compassion. It is THEM that CHOOSE to be negative. We are simply trying to survive something that has been forced upon us and we need HELP not critisism especially from those we love.
I wish you peace and happiness and would be more than willing to lend a shoulder as someone who understands should you ever feel alone. God KNOWS we ALL need one from time to time. X
I have spina bifida. Advanced stage tethered spinal cord syndrome (which spinal cord injury) aracnoiditis. Degenerative disc disease with disc ruptures at L5 and c4 5 and 6. I have neurogenic bowel and bladder. I also have trigeminal neuralgia and bells palsy (my facial nerves over fire and electroute my entire face and head leading to drooping of my face). I have several other syndromes and conditions and ALL OF THEM were caused by medical negligence. My entire spinal cord was crushed and stretched for 32 years before they found it by which point I’d lost use of EVERYTHING from the waste down and every nerve in my body has been catastrophically damaged and relentlessly fires making my muscles rigid with spasticity. ….. I know ONLY suffering as my damaged nerves have lead to every part of my body being totally numb (only sensation other than agony I can feel is pins and needles in a few parts of my face and one foot) and it can be SO hard to exist like this. I do it for my 3 children. If it were not for them I would have gone to dignitaries LONG AGO and if I’m honest death is something I think of EVERY DAY. Trigeminal neuralgia is also called “the suicide disease” because there is no cure no treaten no relief. People take their lives JUST to stop the pain. Not because we are “suicidal” or “crazy” but people just can’t GET that. They think you are crazy if you say death would be the less cruel option even though medically this is known. It is surprising how many people think they can give a more accurate diagnosis than your specialist. They seem to think THEY are more qualified to decide HOW an illness should or does affect a person and THAT stigma has been one of the hardest parts of any of this for me. The trigeminal nerve is the nerve that supplies the teeth ears face and eyes. Tn is toothache in ALL your teeth combined with migraine and ear ache all at the same time. It last hours days weeks or months and when cold blowsy face it is TORTURE. I don’t leave the house for this reason. I have metal work holding upy spine a screws iny coccyx which constantly penetrate the skin and protrude through it making sitting in my wheelchair impossible. Most days I feel like a useless mass of flesh because all I can do is lie here and let the spasticity grip every inch of my body and the pain eat me alive. People who think “mind over matter” can overcome all CLEARLY have never suffered chronic pain. I hope to find others who know what it is like to suffer every second of every day only to be judjed by others on “how much BETTER they’d cope if it were them”. I’ve never met or spoken to anyone else with chronic pain and lvery much look forward to changing that now I’ve found this site.
I cannot thank you enough for taking the time to write down every word I’ve never been able to find. Peace and light be with you all. X
Debra Ann Yianni says
Oh, soo very much relate to what you are going through. Had surgical damage after a long history of fused hip, osetemilitis, hip surgery failed, left with no hip and then had entire left pelvis removed and an ice-cream endoprothesis put it. This causes me constant pain on every simple move. Bending, sitting, twisting. Too dangerous to remove it, cannot weight bare. Have major nerve damage. Could walk before surgery with aids and since both surgeries, have become totally isolated. Have tried everything and nothing but nothing relieves the pain. Lost most of hip function, so cannot do exercises that might give some relief. Oh, I could go on. The worst part of it all is the superior way other people talk to me, thinking somehow I am not trying enough.. Oh if only they knew. My dearest person, just know you are not alone. I think you are incredible and to try and raise your children under such circumstances. I can only offer you my utmost and heartfelt support and admiration. Bless you a million times and know you are not alone and yes, I truly do understand. Please feel free to contact me, if ca be any support or comfort to you at all.
I can’t offer any advice, but am going through something similar. My husband of 24 years is leaving me bc of my chronic pain illness. My daughters are young adults and don’t really like my company. I’m on disability so my fear is living in a high crime neighborhood and living in poverty that’s if I can even get section 8 housing. If not, I’ll be homeless. I have no family or friends. I only have my 2 little dogs to keep me company. I’m pretty sure I’ll have to give them up and that kills me inside. I tried so hard to meet my husband’s demands, but he’s said it’s not good enough and he’s too young to live life taking care of a disabled person who looks & acts like they’re 80.
I’m really scared that I won’t be able to take care of myself. I won’t be able to afford my car or insurance so I have no idea how I’ll get to Dr appts, get my Rx and food. I won’t have medical insurance wants my husband divorced me and I’m not eligible for Medicare yet.
There so many unknowns.
If you’d like to talk lmk.
Amy – I read what you wrote, and felt that i could have written it myself.
I feel like giving up, but something inside won’t let me.
If I find answers or any kind of help, I will send it to you.
Maybe this isn’t comforting, but it is sincere. If we do not help each other, who will?
With deep wishes for your life improving, Eve
Michelle Linfante says
I was feeling the exact same way as you, about to give up. I found a lot of help and support through our county’s resources. I was able to get free medical help, free psychological help, get a case worker who sees me once a week at my dads house who is taking care of me getting into housing,finding all the needs to take care of my disease, Avascular Necrosis. I’ve found charity’s that paid for my entire right shoulder replacement that I desperately needed. I had no choice but to wait as I could barely work ( dog groomer and it is my dominant shoulder needing the help) and no swelling insurance. A case worker can also get you signed up for food stamps and disability. There are dentists and eye doctors available for free. You just need to be self advocating. I found I couldn’t just sit there feeling sorry for myself which I was. In the 12 years of having this horrendously painful disease since the age 33, I’ve lost the house I bought, my career, a fiancé, my new truck, all my Great Danes that I showed and bred, friends, had to move to a different state to move in with my dad and my identity. But I had to look deep down for the strength I knew I had. Nobody else was or could help me so I had to help myself. You have that strength too. Dig down and help yourself.
Cheyenne Steffen says
Hi Amy, how are you now? Looks like it’s been a few months since you wrote this post. Your story broke my heart. I hope you’re ok.
Kristin, reading your words fills me with empathy and caring. I’m so sorry. Although we can only write to each other, please know that I and many others are able to connect with you in a caring way. Love yourself and try to take care
Amy, I felt the way you’re feeling over 20 years ago when I was losing my husband and life to this affliction. Everything has a way of working out and you are going to figure this all out slowly. Things will fall into place and you will go on, hopefully to a more kind and understanding way of life. It’s not over, merely evolving and I promise where there is a will, there is a way! Love yourself, and begin to live for yourself! Much love and gentle hugs for you! 💙
I feel your pain and hear the hurt in your words. Twice my husband has threatened divorce, even kicking me out of the house both times.
Now that this sickness has gotten worst, I have such a tremendous fear of him doing it again.
What does someone do who can’t function, support themself, or have ANY friends do? And then, the person who is supposed to be your partner, in sickness and health, rejects you…..the feelings of being a burden are all too real.
I am seeking the help of a counselor. Maybe that would work for you as well?
Sometimes just having someone listen has the greatest effect.
James Hutchcroft says
Wow ?, someone understands. I’m 51, first back surgery was at the age of 20. I’ve had a total of 4 low back and 3 cervical fusions and a spinal stimulator implanted. For the life of me, I don’t know how I’ve managed to stay employed this long but fear it’s coming to an end. I have difficulty focusing due to pain, if I take meds it becomes even worse.
I contemplate suicide every day; the only thing keeping me from making my move is my children. I’m tired of pain defining me and what I can do. People keep telling me I need to find new things to do; hmm really! That’s like telling Someone who hates a certain food they need to learn to love it.
I fear I’ll be reduced to nothing. One who no longer has control of my life. It’ll be a sad day when I can’t make my own way; which is likely to come sooner than later.
The only action I’m fully in control of will be my death; I wish family would understand that. If there is no quality of life, what’s the point? I’m sick of false hope.
Hi you wrote this last year and I hope you are doing better by now but reading this hit home for me this is how iam feeling now. Hugs
Keegan Donegan says
I’ve been suffering with this for a number of years and everything in tbis article was right on the money. I’ve been on the verge of giving up recently but am hoping some of the tips you’ve given to try will help me. This article came into my life at the perfect time. Thank you.
I am struggling with grief as I am increasingly limited to lying down on my couch day after day. I have Cervical Dystonia, a condition in which my head yanks repeatedly to the right side. The only way I get relief is to lie almost prone. Along with this, I’ve developed body tremors which make fine-motor activities such as crocheting or coloring difficult. My world has shrunk dramatically over the course of this year – so far therapies have not been helping. I’m trying hard to cope and come to terms with this “new” me. I have more hope some days than others. I’m very very grateful for your website, and am finding some comfort here.
My sincere thanks for what you do,
You’re so welcome, Jacquie. I only wish that comfort would shift into miracles and actual relief for you, and so many. Gentle hugs, strength, and courage but if that’s far from enough, know that even the darkest times can be lit by the smallest light. One book that brought me a lot of comfort was “The Happiness Trap” by Russ Harris. I hope it helps you too. ♥ x
Hello Jacquie, my name is Nellie, I have Congenital Torticollis of the neck, I have never been able to find anyone with the same condition. The term Cervical Dystonia, has been used by my Doctors many times. Its so difficult to explain to other people, so I just refer to it as a birth defect. I have had surgeries since the age of 6 and 30 years of Physio on & off. It has gotten so much worse with age. I am very sorry for your situation as I understand it only too well. I would like to talk with you if you don’t mind,,
Roberta Hubbard says
Wow, this so describes me. Thank you for posting this. I want to download this article. Trying to get into a pain group that will meet once a month, and that should be nice at least. After 9 years of chronic pain, I think I am really now feeling like all the hope I use to have is slipping away. Accepting my new, old self instead of the gay, hopeful of healing self again which has not really happened. Yet, now I live with the facts the doctors said to me years ago, (which use to freak me out) “learn to live with your pain”.
Jacquie Fuller says
Hi Nellie, I can’t believe I am only seeing your comment now, when you posted in January! I am so sorry. It’s heartbreaking to hear that you have had this since the age of 6. I would be happy to talk with you.
It’s been a big year for us. We moved from our home of the past 35 years back to my hometown in May. Soon after, we moved my mother-in-law to a nursing home in our new area, only to have her take a very bad turn and pass away three weeks later. Since then, we’ve been cleaning and emptying both her and our own homes, getting them ready to be sold.
Doing all of this with cervical dystonia has been a huge and challenging effort. We are hopefully looking for our lives to settle in early December, when both houses (praying!) will be sold.
I hope you are finding some brighter moments at times. I seek them out every day, but have to say it’s not always a success.
Alta Hanlon says
Sorry to hear this. My exhusband had this condition and at the time the doctors weren’t much help. It’s an awful thing to deal with for both family and patient. They called it “spasmodic torticollis” or “wry neck”. I just read an article on it recently. This article connected called it a “movement disorder”. He was only 35 when it started. He also had RA that started in his 20s, so who knows what causes it. I’ve also heard that it can be caused by irritation to a nerve root. You are only the second person that I know who has this, and I know from observing my ex that it takes a strong person to live with it. Strange though, it goes away when the person is asleep.
Thank you for your comment, Alta, so glad you enjoyed this piece. ♥ x
Jacquie Fuller says
Thank you, Alta. It is a challenging condition… makes even the smallest tasks difficult. Thank you for sharing your experience with your ex. So few people know about it, and definitely don’t understand how life-changing it can be. I hope he has found some way to get relief.
Beth Douglas says
I tried to subscribe but don’t think it took. I have interstitial cystitis the short name IC. It is where your bladder does not work right. Your going all the time it can be every 5 minutes or you can’t go at all. The pain from inflammation and swelling in unbearable . They have no meds no treatments everything is trial of meds they use for other things.. A very very hard disease to explain to people. I have had it for 16 and a half yrs and family still treat me stupidly over it and ask stupid questions. Have lost friends over it they walk away I think hoping I won’t notice. I think I noticed………you were here all the time and since I have been in a flare up you are never here. IC goes in and out of remission.
I have had that for over 13 years along with a lot of other health issues all stemming from Fibromyalgia. The worst part for me is voiding 30+ times a day and 4+ times a night. I feel you.
I’m very lucky today because I found someone who can describe what I went through accurately with class 🙂
You’re so welcome, Sasha, and thank you, so pleased this resonated with you. ♡ x
Best article I’ve read yet. I will read it again. My biggest thing right now is that I have difficulty in doing what I like in my career. I’m just not willing to accept brain fog, etc. But I dont know how to solve things. ~sigh~
Thank you, Mandette, so lovely reading your comment. You may enjoy this post for tips for coping with brain fog, or this with natural supplements and herbs. Really hope you find some relief, and so please this post resonated. Gentle hug x
Mandette: Yes Yes Yes. Still trying to fake my career and pretend I have a future, while watching the ratio of what I can do to what I think I can do slowly drop off. But on the outside, I look fine.
This is a beautifully written article on the realities of life with invisible pain and illness. I love too that you gently remind us of the things we can do to take care of ourselves. As alien as it may seem to many chronically ill people, doing whatever little things we can manage help us to keep hope and keep going. I really get that. Thank you.
Such a pleasure, Jane. Delighted you enjoyed it, and agree that these little things, tiny pockets of joy and calm in the challenges are truly what help us manage, cope, and keep going. Thank you for your lovely comment. ♥ x
Wow, just spot on! It perfectly describes what I am going through now. Thank you!
Pleasure, Kerry! Gentle hug ❤️
I’m not sure how I found this website / article and I’m not a Princess, but I’m very glad that I did. You are spot on with everything. I’ve been living with chronic pain for about 10 years now and I feel like I’m at the end of my rope. This article reminds me that I’m not alone. It’s a relentless battle, for sure.
Haha that’s OK Rick, royal suiters, warriors, vagabonds, all welcome 🙂 Delighted you enjoyed this offering. You’re not alone though I know it is relentless and so easy to feel we are entirely alone in it all. So pleased you found this humble palace. Wishing you many more ‘better’ days than bad and gentle hugs. ❤️
I felt slightly better after reading this. The biggest thing I struggle with is guilt that I’m not the mom I want to be to my 3 small children. I have a fear they will grow up feeling I limited them from enjoying their lives. It’s so hard for me to communicate my soul to them, but I need to start. They are incredibly understanding and loving. I want to write them letters telling them how special they are to me.
Jennifer C says
Such a true close to home article that describes what I feel and live with everyday! I’ve been suffering with chronic pain close on 4 years now and I still long and hope for some relief! I’m holding on to the person I used to be and long for her return surely this can’t be how I’ll spend the rest of my life! I’m 37 and don’t really go out at all isolation within my home is how I spend my days struggling with pain. I know I don’t suffer alone but can’t bring myself to seek out help as I know sharing what I’m going through might help. I will keep fighting I’m determined to but let this completely consume what is left of me!
The unloved one says
Today it rained. I was so happy to see it come and cool down the painful high temperatures that have been torturing me for the whole summer. The rain released the barometric pressure which was causing an insanely painful flare up where panic sets in as I fight to stay alive.
Heat and humidity have become my worst enemies since 2012 and even before that when I was not so bad off. I am tired of being in pain. The tears, the isolation, the crappy friends and family that have deserted me. The hateful comments from strangers who like to prey upon the infirm and drain away all hope and energy. I am tired of having to explain and defend myself. I hate many people now. Every time I go outside I have to be prepared for the pain and the stress of being in public, forced to leave or stop whatever I am doing because of my illness.
I plan things to keep me going, but I know one day it will consume me and I will have to surrender, perhaps to a nursing home. I hope I die first before that happens. I was so sad when this happened because I was healthy and, although mostly unloved, I was independent and could protect and advocate for myself. Hard to do now. Unloved and uncared for people need to be healthy, otherwise, it makes life impossible. One day, death will be my merciful solace. Until then…it’s all about the pain…
I feel your pain. I’m in a very similar situation. My husband of 24 years is leaving me. I only get disability and have no friends or family. I’m so scared of being homeless.
I am so mentally and physically exhausted fro my chronic pain. I suffer from Modic 1 disease.
It never stops. On a good day the gnawing in my lower back allows me to get up with my 2 beautiful kids, get them to school, come home and rest then pick them up to take them to their activities. On a bad day I’m curled up, drugged up and do the minimal which is drive them to school, skip their activities, make dinner and sigh relief when they go to bed.
I used to be a rocket. I loved all sports, was active in my community and was joyous with my husband and kids. Right now I’m on vacation and I haven’t left my hotel in 4 days. I have worn my strong husband out, and worry non stop about his stress levels and ability to cope. I have a deep love for him but see our former marriage dying. My kids I worry will be dysfunctional because they see their mother on the couch all the time. I don’t know what my next move is I have tried all therapies doctors physiotherapists massage therapist every specialist in the field, yet no one can help me.
I wish I could cut off my legs and sever my spine so that at least I could wield around and be part of the woman I used to. I no longer tell friends about how much pain I am in . have isolated myself from everyone except a dear dear friend and my husband. I was told that marriages end in divorce with Contant chronic pain and that I should just shut up and put up by doctors.
I am only 45 years old yet I wish the next 10 years would fly by so that my kids would be in University and I could exhale because my role as a mother helping them with their homework and studying to get them a’s would be no longer required. as for my husband I want him to have a wonderful life full of joy and positive wonderful things.
I do not know how to escape this prison I have put myself in or rather my body has put myself in. Side effects from my medication are brutal and yet they are my life blood. I wish I was dead sometimes as I can’t imagine another 40 years on this planet with this horrible horrible pain. I am reminded there are worse off people than I am, and my children need me so I try and fight the fight but I am starting to fade. I am a Christian and I pray to God for help. I do not believe in suicide and would never contemplate it. I do not drink in fear that if it worked or cure my pain I would become an alcoholic. As I mentioned my kids need me and I love my husband and don’t want to put him through anymore. I have an excellent pain therapist whom I get injections from but I question whether they really work as I need my meds to really find relief. The side effects are brutal. I cannot eat as bowl movements are excruciating. I don’t sleep because I wake up needing medication.
The guilt I feel is a demon. I worry about everyone in my family constantly.
In short, I find other stories of people like myself make me feel less alone. I will never give up. I love my family too much but worry about the strength I have left.
I have a lot in common with the suffering, dissapountment, and circumstances that you described. My pain ranges from severe to extreme and, except for stem cell therapy, I’ve done everything you can imagine to try to get relief; I even had two level artificial disc replacement surgery in Europe. It turned out that I waited too long for surgery and the nerve and other tissue damage that I sustained while toughing it out became permeant. It’s been nearly two years since you posted this. How have you been the past two years?
IT WAS A BLESSNG I STUMBLED ON TO THIS SITE.AND ITS WRITINGS. I AM SHARING THIS WITH MY FAMILY THAT HAVE PULLED AWAY AS IF MY CHRONIC PAIN AND ASSOCIATED ILLNESSES, OF WHICH ARE MANY, ARE CONTAGIOUS. I GOT BRAVE AND RECENTLY BLURTED OUT AMONG MY TEARS, TO MY UNBELIEVABLY HEALTHY SISTER, ( of which I give praise and thanks daily that she is) “I AM SO LONELY”, RESPONDING WITH HER HABITUAL REPLY, ” JUST HANG IN THERE AND DO WHAT YOU HAVE TO DO.” SEVERE CHRONIC PAIN FOR 10+ years, SOCIAL ISOLATION, WITH 2 YEARS OF LOST ABILITIES TO WALK OR STAND UP STRAIGHT, I HAVE NO PATIENCE TO TOLERATE THOSE REPEATED, THOUGHTLESS REMARKS TOPPED OFF WITH “REMEMBER THERE ARE OTHER PEOPLE IN THAT ARE IN WORSE SHAPE THAN YOU”!!!HOW DOES SHE KNOW THAT WHEN SHE HAS NO CONCEPTION OF HOW I FEEL LET ALONE THE “SHAPE OF “others.”
SO I KNOW YOU CAN SEE THAT YOUR SITE, WRITINGS AND POSTINGS HELPED ME TO MY CORE, CONFIRMING I AM NOT CRAZY NOR AM I ALONE IN THIS TRANSPARENT BATTLE, NEVER EVEN HEARING BEFORE TODAY, THE TERM OF “SOCIAL ISOLATION, I ONLY WAS FAMILIAR WITH ALONE and LONELY. AGAIN, MANY THANKS TO ALL WHO WROTE SO ELOQUENTLY THROUGH THEIR CHRONIC PAIN AND ISOLATION.
That is me in a nutshell. Chronic pain and fatigue. 25 years and I am still here. But I have removed myself from much in life. I don’t like to disappoint or let people down. I just try and ignore the loneliness and the depression. It’s a day to day kinda thing.
What’s really astonishing is how people with disabilities and chronic illnesses are treated in the workplace. My case is pretty pathetic because even with all of my problems (I have the above two ailments) I’ve still continued to help family and friends. Now I’m not saying that I’ve never received any help back but the level of indifference to my situation is extremely depressing. It feels like a long prison sentence and I don’t even know what crime I’m serving time for.
Too often I have been treated terribly for no reason and get this… whenever it seems like I’m improving or doing a little better these people make it clear that they are not happy for me and do not wish me well. Any dreams or goals I’ve had in life were completely ruined and I’m trying to rebuild my life as best as I can.
I’m not a perfect person (who is) but I know I’ve put way more into my life than what I’ve gotten out of it. Yes I had many of these problems before my health failed me but they are even worse. Even still I’m still pressing forward everyday trying to stay positive. It’s frustrating because I’ve witnessed others have troubles but they bounce back and good things happen to them again. I just recently completed my masters degree with honors and I feel incredibly blessed but I’m at a crossroads wondering how can this help me advance in my career when my disability has hampered me so much.
so much I can relate to even though I have mild pain…but I have a chronic illness that in easy words means my body cannot make very much energy….it is Chronic Fatigue Syndrome.
I am single, live with my sweet dog. Very lonely due to being hombound except church and medical apts….alone almost always. When I searched lonliness online all the links are suggestions how to cure lonliness…..which apply to well people who are lonely. I live with chronic extreme fatigue, sleep is difficult ….very sleep deprived, muscle fatigue, brain fog.
I think of inviting a few people to visit, but it is too exhausting. I need quiet alone days for my sick body and to avoid feeling even worse by trying to do anything…..but my spirit cries out for connection. I am a Christian and find comfort knowing this life is not all there is….there is eternal life with no more suffering, pain or tears….still the lonliness is very painful.
I understand. I have fibromyalgia and Chronic fatigue and I have had a dvt .
Anxiety is there at times too. I have family members that believe what I have is all made up and is a result of my diet.
I have had the first two conditions for over 20 years and was diagnosed by 3 specialist and 2 primary care.
The exhaustion gets to me that I wonder if there is something else that is at bay.
I have others in my family who have other health concerns and get upset with me that I am not there to tend to them or help.
I have always been there for others until lately when my exhaustion just seems to be getting the better of me. The pain is there and I do not know what to do.
I recently had to move in with !y daughter and her family due to my RSD spreading. After another surgery. I Stu!bled upon this site and am so happy for that. Feeling so guilty for being a burden. This helps to ease the pain a bit.
Mahalo nui loa
I skeptically typed the phrase ‘feeling isolated and in chronic pain’ into google with some dreamed up idea that the internet may have the answer… and for once it did. Your article and everyone’s comments brings a huge sigh of relief and i feel exactly what this article discuses. ‘Im not going Mad… I’m just in pain!’
I’m 24 and have been in chronic pain for over a year. I have spent every penny i had seeing specialist across the country and months waiting for doctors appointments. Every doctor i met was super caring but couldn’t come up with a diagnoses and sent me on my way. The exhausting pattern of explaining my pain to people and them not truly understanding or ignoring it has made me stop explaining it. I felt it was easier to fake smile then truly tell them my living nightmare. The pain had gotten so bad that i had stopped eating, drinking and spent my nights curled up on the bathroom floor in a flat i was renting with strangers. It didn’t help that my new flat mates stopped talking to me when they had clocked on how ill i was. But it was ok because i had my job in television, a job i had worked so hard to get. I used to turn up hobberling with ice packs and an assortment of pain killers trying to tackle the day but failing miserably. Eventually that went to and i found myself, broke, no job, no flat and moving cites to live back with my parents. They are the most amazing supportive parents and i love them so much. However, months have rolled on and i now find myself depressed and isolated in my pain. The friends i once had have slowly disappeared. The only text messages i get are from banks offering over draft facilities. I find myself in a deeply painful situation that in my early twenty’s im in agony, with no friends and my only company is my elderly parents when they return from work. I live in my old childhood bedroom, winnie the pooh stickers and all, and i have lost who i am. I feel like my life is on hold and everyone else is rushing past me and im shouting and nothing happens. i’m just here.. in chronic pain and hoping that any minute now it will stop and i can get my life back.
I appreciate there are people in this world, on this page who have far worse situations then i do. But I’m broke, in pain and frightened, and with out a diagnoses trying to receive any financial support from the government has failed. My parents cant support me forever and then what? A daunting thought. Thank you for writing your page… its so relieving to know your not alone. xxx
Joe Rhea says
Thank you for your article. I too can relate to living with chronic pain. I broke my neck and was initially paralyzed from the neck dow at the age of 14, on 9/11/84. Today I am 47 and have lived with chronic pain and a hidden disability for nearly 34 years. To look at me you would think he is fine. People see a man who can walk, who can golf and even snow ski and Think “how bad can it be?” I can understand why they would think that. I might had even thought like that too had I not gone through this for so long.
See my pain come from nerve endings and atrophied muscles that strain with every single movement. My upper extremities are severely weakened, and as a result I have to overcompensate with the other muscles that aren’t as effected. Yet all 4 limbs are weakened. I have quadriparesis, weakening of all 4 limbs. So that allows me to function, walk, even run, but with considerable pain as a result. The bones in my neck ache all day, my hands throb because they tire instantly from just about any movement. I am already tiring while typing this reply. My shoulders fatigue when I wash my hair, because I can barely lift my arms above my head. Yet all I ever hear is, “at least you can walk.”
I am not in anyway saying that I am not eternally grateful for the ability to walk and do things I love. But I do them because I choose to, because I don’t want to let it rule my life. Now with that said, after snapping my fib-tib clean through 4 years ago, I do a lot less. Another painful injury that still hurts 4 years later.
What hurts me most mentally is that my family has never even tried to understand what I go through. I don’t think my mother has even once read one article on people living with chronic pain. She just says to me, we all have problems. I no longer associate with friends and I have isolated myself so much because I am tired of being tired and defending myself. I would just rather avoid everyone. But I am also a romantic and would love to have a loving relationship. I’ll have had two failed marriages because neither one even remotely understood what I go through. I am deeply saddened and live with clinical depression as well. The one joy in my life that keeps me moving forward is my daughter. She is 9, and her life is my valuable then mine, her happiness is more valuable than mine. So I don’t give up. If she had not been born, I don’t know if I would be here to have been able to write this reply.
My kids kept me alive as for them I pushed through each day. They are grown now, 21 and 24 and so I am thankful my job is done but now it is very hard to keep pushing through each day. There seems to be no point. I hope this finds you coping.
This is a difficult but so close topic to me. I have a chronic disease that greatly limits my activity. It’s even funny to see when you tell other people about it, but they forget about it after an hour. Whatever psychologists say, but this is my struggle alone. I carefully plan my work schedule and use a natural painkiller -https: //provacan.co.uk/how-cbd-works/ This allows me to understand when I already need to rest. I have limited my circle of friends to a comfortable level. This is the easiest way.
Hope my daughter-in law reads this. She had a spinal stroke of lower back has caused a lot of nerve damage and chronic pain among other symptoms. I am still searching for ways to help alleviate her issues.
this is so deep and true. i am facing the same issue. hope for the best 🙁
James Lucas says
You name it, I’ve probably tried it. Life like this is indescribably dreadful. To the point that you may not be suicidal, but you welcome a natural death. Even with a loving wife and teenage son, pain just sucks the life right out of you. Caring for anything is always second place when trying to block out 24 hour acute chronic pain.
I am a chronic pain patient from a spine injury several years ago. The nerve damage was so severe from blood that entered my spine and pooled around the L3 (lower spine) I became a paraplegic. While in rehab learning how to live life in a wheelchair, I started getting some movement in my right foot (toes only). After 6 months of grueling work to learn how to walk again, I came home in a wheelchair and had the whole house equipped with handicap amenities. The neuropathic pain was unbearable but I was given strong pain meds to get me thru the days and much harder nights. Night time can be pure torture for sufferers of badly damaged nerves. In another life, I was an engineer with a good company, many hobbies, outgoing & sociable. Wow has that ever changed!
The hard work didn’t pay off as hoped and I stopped progressing after a year or so and became stuck in a half paraplegic like disorder. All body functions are similar to a paraplegic, total loss of penile & most bowel feelings (I mercifully spared you the disgusting details), one almost good leg, one 20% functional with a damaged paralyzed left foot, but I became able to walk again. Albeit very slowly with a cane, but I could walk! You would think this is a good thing. Wrong! Nerves in my lower body constantly tell my brain that certain areas are in acute chronic pain. Walking, standing, sitting, almost anything I do creates chronic pain. Nights can get so bad you would have to experience this to fully understand. It’s tough day and night even with the help of a loving wife and wonderful son. Combined with a 60% pay cut from a partial pension & disability, and burning thru a 401k, life is rarely enjoyable.
With pain management, I could function enough for things like dining out, local festivals, movies, doing small tasks, etc. Not much, but I could do things with all the neuropathic pain in my lower body. I also went to the therapy gym 3 times a week. Nevertheless, I was still in bad shape and only one weekend away from home since the injury 4 years ago. I also have to miss our annual trips to visit other countries. I hate to think how traumatic this must be for them and all I can do is say I’m sorry.
Then the opioid crisis came. The government had to clean their own opioid mess while taking on the cartels flooding us with heroin, meth, etc. Chronic pain people like me became caught in the middle and lost all quality of life. Just google some articles and you can see for yourself how bad it is for us. The summer of the pain meds cuts, I could truly ride a bike around my neighborhood. Getting on & off was challenging but it was such a wonderful feeling. Unfortunately, this only happened about a dozen times that summer.
I was wearing a fentanyl patch (75mcg), oxycodone for breakthrough pain, benzos for tremors/anxiety and sleep. My neurologist, a good man & caring Dr, was fearful of the government & meds he courteously prescribed and cut me down to 25mcg, then one day a 30 day supply, and a certified letter explaining I was no longer a patient. He asked me for a couple months to change to a pain clinic but my replies never got conveyed correctly. NO Pain clinic would take me because I was wearing a fent patch. Well aware of the peril I would face, I learned how to purchase my own fent patches & benzos. During my first seizure, I tested positive for fent and a benzo and labeled a “substance abuse user” with “drug seeking behavior”. Translation: Most in the medical field don’t care about you, and it’s easy to know whom since the apathy is so evident. Using the current permissible prescribed “pain management” meds, I am mayhem of pain, disturbing tremors, spasms, etc. Sleep is a disrupted 60-90 minutes interludes of waking in pain/burning legs blood pressure can be over 200/110 and 120 BPM (this is sleeping, BPM should be 60 and BP40% lower). This cycle repeats until around 9AM, and then I am so exhausted from what I went thru the last 8-10 hours I sleep on/off until 1PM. I keep a nighttime log book with wake times/pains and even with the strong pain meds, I look back and it’s similar to now. I don’t think there is any pain med strong enough to block this sleeping pain, it’s just too dominant. I even asked to have my left leg amputated below the knee and they quickly said no because I would still have phantom pain (surprisingly this is not an uncommon request). That’s some seriously damaged sensory nerves.
Now I can only leave the house for an hour or so. 9 months since I went out with my family to visit friends & relatives. My life is a constant battle with pain that is noticeably slowly killing me since symptoms are worse now than 9 months ago, especially the hand tremors (makes typing and texting interesting). On the worst days I have one foot in a nursing home and easily could have had a stroke or died twice. This is what I live with now…………
Diagnosis Just This Year 2019 – Aneurysm, Seizure disorder, Acute Encephalopathy, PRES/hypertensive encephalopathy, Complex regional pain syndrome (CRPR type 2), Metabolic disease, acute anxiety (when pain gets bad), High blood pressure disorder, Tremors, Neurogenic bladder disorder, and from my latest EKG (No cardio follow up at this writing): Marked sinus bradycardia, Left anterior fascicular block, septal infarct when compared with ECG of 2/16/19 (last seizure to date), criteria for septal infarct are now present, and the best for last: Complex regional pain syndrome (CRPS type 2). Most can be caused from chronic pain. The pain affects attacked my brain and now it looks like my heart. I think most experienced Dr’s would agree. I could get a PTSD diagnosis if they checked.
This is what our great country’s is doing to chronic pain sufferers. Some selections that sufferers choose now: Getting your own pain meds (unmanaged self-pain control eventually grows out of control), live in a nursing home for pain control (been there, hate it), suicide (to dreadful, but a natural death is welcomed by many) or slowly waste away and die because chronic pain stops most activity, it’s hard to smile or laugh anymore.
Thank you so much for this website and for your twitter posts (where I found you).
Your writing completely reflects what I’m going through – the pain, isolation and fear for the future. My life has been reduced to whatever I can find on the screen of my laptop. I have Chronic Fatigue, which has been debilitating. Every once in a while I can get out and see loved ones, but I pay for it for weeks.
I saw something else that encouraged me to write. I noticed a few people here commenting on Spasmodic Torticollis/Cervical Dystonia. My mother has that. I saw her life ruined when I was a kid. She was in so much pain for years and tried to commit suicide twice. She finally
had a brain surgery where they put an electrode (I apologize if I’m getting the terminology wrong) in her brain that stimulates her nerves and stops the muscle spasms. It’s powered by a battery pack that was implanted in her chest. (This sounds weird, but it’s true.) It has helped her a lot.
She now has much, much less pain and leads a normal life.
I’m not sure what the rules are for suggesting help for others here (there
Is so much false hope out there, and we can all be so crest-fallen when
It doesn’t work out), but I had to mention this just in case. It was such
a life-saver for my mom. I’m not even sure if the commenters are still on here anyway. Their comments are a few years old.
Thank you for all that you do.
Nancy Hendrickson says
Easier said than done. I find it has been impossible to find new friends that I can do things with considering the limitations I have due to pain.