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. ♥
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