The Isolating Loneliness of Chronic Pain & Invisible Illness

Quote princess breaks

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

Young woman sitting in a jar

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

Broken Down Woman

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

princess quote depression lonely

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

beauty girl cry on black background

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

young desperate man suffering with hand on head in deep depression pain emotional disorder grief and desperation concept isolated on black background with grunge studio lighting black and white

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

Beautiful teenage girl sitting on the floor crying

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

beautiful woman tied screaming with fear

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.

View of awake woman suffering from depression

“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

Crying african ghanese young woman shedding tears

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

Asian young woman is suffering from pain in the stomach she is lying on the bed.

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

Photo of lonely sad woman in distress

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

Depression In Young Age

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

Vintage clock on antique map. Retro still life

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

Chat

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

Close-up of psychiatrist hands holding those of her patient

“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]

Woman holding bouquet of yellow dandelions outdoor in summer close-up of hand with flowers. Vintage image

“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. ♥

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Gentle hugs x

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

Invisible Disabilities.org

 

 

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Comments

  1. 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.

    • PrincessPrincess says

      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 ❤️

        • PrincessPrincess says

          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 “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

    • says

      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.

      • PrincessPrincess says

        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

      • Amy says

        Kristen,
        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.

        • Eve says

          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

    • 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.

  2. Jacquie says

    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,
    Jacquie

    • PrincessPrincess says

      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

    • Nellie says

      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.

        (((Hugs))) Jacquie

    • 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.

      • 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.
        JJ

  3. 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.

    • Amy says

      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.

  4. Sasha says

    I’m very lucky today because I found someone who can describe what I went through accurately with class 🙂

    Thank you.

  5. Mandette says

    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~

  6. says

    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.

    • PrincessPrincess says

      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

  7. Rick says

    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.

    Thank you!!

    • PrincessPrincess says

      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. ❤️

  8. says

    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.

  9. 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…

    • Amy says

      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.

  10. Sylvia says

    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.

Trackbacks

  1. […] Winter too is often the toughest time of year for so many who live with painful chronic conditions. Other challenges from depression to fatigue to nausea to inability to think or converse as freely as you’d like — through brain fog, high pain, medication or a fusion of them all — also makes being a part of celebrations complex. Yet we do still long to connect with loved-ones, especially if so often isolated because of chronic illness and pain. […]

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