Each time we are told that we ‘look good or ‘look well’ by people who have little concept of even the lengths we have gone to just to connect with them at all, it carries with it an additional pain of appearing ‘well’ or ‘normal’ despite how awful we actually feel.
Our culture does its best to ignore the existence of illness, especially when that illness is chronic, invisible, complex and as a consequence doesn’t fit inside the mainstream idea of what ill-health means or apparently ‘looks like’.
Instead the focus is on the beautiful, the youthful and the healthy, as if in denial of ageing and illness. Mainstream media also seldom caters for those with ill-health, disability, limited mobility or pain but exclusively the ‘well’ population.
So when you live with a condition that defies others’ ideas of chronic illness or cannot be placed neatly in a box, sadly it’s often us who are expected to explain and even defend the very symptoms that thwart our entire lives.
You Don’t Look Sick
Living with constant pain, disability and limitations means that your life is already full to the brim with challenges. Yet our inability to ‘be well’ coupled with looking healthy presents further challenges, from being disbelieved and poorly treated, to being judged or repeatedly advised on how to ‘heal’ ourselves.
“The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses,” says chronic illness patient and advocate at the Invisible Disabilities Association, Sherri Connell.
“Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to.”
CRPS with its excruciating, constant pain and mystifying symptoms is so difficult to understand that even our own families and loved-ones may prefer denial to compassionate support and care. Symptoms such as allodynia for instance, such as a breeze causing searing, burning pain, or sound sending our pain levels soaring are so far from general understanding that even those closest to us may be filled with dismissive disbelief.
Fibromyalgia and CFS [and many other painful chronic conditions too] also force patients to deal with such an extensive list of symptoms that they too have to deal with an onslaught of doubt, disbelief and even criticism from those they care about or, if able to work, from those they work with too.
You’re Meant to Get Better
It’s accepted when someone has acute pain because of a recent injury or through surgery. It’s also accepted if someone is unwell but then they are supposed to get better. When we don’t improve and our symptoms even worsen, it is us who are frequently thought to be exaggerating, faking or simply not trying hard enough to rejoin the well world.
This is compounded by the fact that in spite of CRPS, CPS, fibromyalgia or chronic pain and illness, we usually look healthy. As if anyone would ever choose ill-health, isolation and all the other less-thought of but extensive aspects of living with painful chronic conditions, much less miss their own beautiful lives. It’s already tough enough dealing with pain and illness, without the added burden of disbelief.
“Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved ones belief, respect and understanding. While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering,” says Sherri Connell.
When you ‘look healthy’ but feel broken inside, it’s easy to feel it’s your fault that your body has broken down in some way, as if it’s a personal failing. Though you would never force that assumption on another, we are so frequently hardest on ourselves, further adding to the burden of loss and ill-health.
It’s as if in some distorted way we punish ourselves for our own body ‘failing’ us. When your body feels more like an octogenarian’s than young or middle-aged, you are forced to adapt your life accordingly and that also causes pain.
The pain of a life un-lived or a life lived in a way that is so unlike how you imagined, so limited and thwarted that you feel a constant sadness, whether you express it or not, which can add to this self-blame and lead to us not always speaking kindly to ourselves.
Yet to move forward and find a little internal peace in spite of this sadness and resistance to change is to speak kindly to yourself and let go of any self-blame. If you find yourself struggling with this, read How to Use Pain Psychology Techniques to Reduce Anxiety, Depression, Anger and Guilt for some powerful and effective tools to help you cope.
Chronic Pain is Age-Neutral
The expectation of good health by our culture is especially hard when chronic illness and pain begins so early in life. My own CRPS began six weeks after my 22nd birthday (fibromyalgia four years later), and I know others who had even less life before losing all concept of comfortable and freedom at such a young age.
When it all starts as adult life is only just beginning or even yet to begin, instead of mourning the life we lost, we mourn the life we never were able to live. There are also additional pressures from friends who we long to go out with, dance with or even simply sit outside with but suddenly can’t.
It’s normal to face added pressures from families too. Despite the average age of onset being well past child-bearing age, many young people who struggle with chronic pain and illness have had to give up dreams of having a family or living a normal life and that hurts even more.
The flip-side of this is already having a family when chronic pain or a pain condition strikes and having the guilt over not being as active a parent as one had dreamed of. I know mothers with CRPS who are naturally devastated at not being able to be the parent they could have and long to still be.
The isolation can be devastating, as we are forced to adjust to a life of relative social isolation as many loved-ones drift away from what they may see as a dubious diagnosis or at the very least, one that to them seems impossible to understand.
Convincing the World it Hurts
It adds to the stress of living in pain when you have to also try to convince the world that your symptoms and pain are real. As invisible illness or disability is so misunderstood it often falls on the one in pain to educate others, or even simply defend their own symptoms.
“It’s always nice to be told you “look so good” because we know the person’s intent is to make us feel better,” says Lisa Copen, patient and founder of the Invisible Illness Awareness Week. “But I also think that for people who feel terrible, it’s another way they feel that people don’t understand the seriousness of their illness and immediately close themselves off to anything else the person has to say.”
Initially your friends and family may respond with concern and compassion, while others may be more distant. Some people are simply uncomfortable with illness. As weeks turn into months and months into years, even those who were originally sympathetic may question the existence of an illness that is invisible and incurable, or they may simply feel too uncomfortable to acknowledge it.
Living with, managing and coping with a complex chronic illness and pain can naturally make us isolated, anxious, vulnerable, and depressed. Adding the disbelief of those we care about can crush us, especially when some friends and family drop away but it is vital to remember that you are doing the best you can given your particular set of circumstances.
Also that things can and do improve, they may not improve as much or as swiftly as we would like – no one wants to live in pain – but there are still good things ahead of us. Allowing ourselves to feel how we feel and the grace to accept where we are regardless of the opinions of others, can help us make it through.
Of course it would be easier, far easier if we had the support of others who we care for but that isn’t always possible. The kindest thing you can do for yourself is to support yourself regardless. If you are feeling depressed, read How to Cope and Heal Depression When You Have Chronic Pain and Illness and reach out for support, whether online or in person.
Hiding Your Pain
Years of constant pain can make us masters in the skill of hiding our pain. Everyone with severe pain knows that we can and do have moments where we appear to be almost normal, not that it feels like that from this side of the window. The pain can be horrific but we choose to hide it to lessen the burden of others.
No one likes to see another in pain and moaning about it or indeed grimacing or wailing, it doesn’t help the pain, patient or their loved ones. Just as we struggle with an illness that is so tricky to understand, others find it even harder to comprehend because they not only cannot see the pain that we also become adept at knowing how to hide it.
We don’t want to express the physical pain all the time and when you live in constant pain, there is little point in doing so. Exhibiting your high pain levels only serves to make others uncomfortable. They do not know how to react and not being able to alleviate your pain can make loved-ones also feel helpless and sad.
So we hide it but that, of course, makes the less understanding of souls also delude themselves into thinking our pain is reduced or far less severe than it truly is. Ironically, the act of forever hiding our pain actually works against us in a medical setting when even pain specialists themselves forget how adept we become at hiding the true level of our pain, and us unable to truly show it.
The more years in pain, the more your own personal pain scale shifts. To begin, everything feels like 8/10 or higher but when 8/10 is your new normal, that slips tp a 7/10 or even a 6/10, reserving the higher numbers on the pain scale for the truly horrific flare-ups.
Being Judged on One Moment
Every pain patient knows how difficult it is to constantly adjust to unpredictable symptoms and fluctuating pain levels. Our limitations may allow us to engage in an activity one day that is completely impossible to contemplate the next, or even again that same day. You may be able to walk 5 metres but afterwards it may take two hours to recover from that.
Variable, chronic and complex conditions and our own ability and function can never be gauged by a single isolated activity, yet we are so frequently misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it’s all or nothing: we’re either ill or we’re well; we’re either in pain or we’re not. If we’re seen doing anything ‘normal’ [they assume] we must feel good.
The reality is that we would have not only prepared extensively for every activity – and have had to pace every activity – but also are guaranteed to be pinned to the bed afterwards through a flare-up of pain.
Many who live with severe and painful conditions can only manage one ‘big’ activity a day, especially if it involves leaving the house. If that day has a medical visit for example, everything pivots on that single activity and appointment. The tiny one or two-hour window in which we see others may have taken the entire day to prepare for and more to recover from. Others may be able to do more, some even less.
Being Judged When We Need to Cancel
Nothing hurts more than to have someone dismiss your pain or treat you with scepticism and resentment but unfortunately, it happens and far too frequently.
It’s such a sad fact but a true one that when we are forced to cancel an event at the last minute, we are heartbroken and our body is broken too.
Whether through the sheer exertion of preparation for the event or simply flaring-up but the whole day resting for it and avoiding doing the things we love takes an extra beating when our loved-ones dismiss our cancellation, entirely unaware of just how much has gone into our trying to see them, not to mention the heartache and sadness at not being able to see them or get out of the house or bed.
Happy is Not Healthy
Many symptoms of our chronic pain condition(s) are entirely invisible. We aren’t all in wheelchairs or use walking sticks, in fact only 8% of disabled people are permanently in wheelchairs. Nor do we all share the same obvious symptoms.
Since chronic pain, exhaustion, and the seemingly endless symptoms can seldom be seen, others frequently have a hard time believing that anyone who looks healthy or is in any way animated can have so many profound symptoms and limitations. Yet our happiness is so often confused with being healthy or miraculously cured.
As the majority of our lives are spent in isolation and always in pain, we do light up when in company but only briefly. After that brief visit – that we no doubt had to rest before and prepare for – we collapse and can do absolutely zip but this is as hidden as our symptoms and rarely acknowledged by others who are more dismissive of our condition and pain.
We often appear to be healthy, especially when we help manage our condition(s) with good nutrition, gentle movement/stretches, deep breathing and meditation – all these things help to blur the barrier between happy and healthy – something that only serves to magnify the many problems associated with invisible illness.
Some pain patients go to great lengths to look far healthier than they are and feel but to the detriment of their symptoms or increased disbelief from others. Pacing is a wonderful tool but on occasion, we have to choose our battles and ask ourselves if the psychological benefits of leaving the home to see friends outweighs the elevated symptoms, bed rest and high pain after the event or activity.
Find support in the ever-increasing array of pain communities around the globe. The internet has brought so much to those house-bound and in pain. We are no longer so isolated or at the mercy of the sometimes vicious opinions of others who simply do not understand and choose to be cruel in their denial instead of kind, and we can always be kind to ourselves.
There are some great support sites online , while counselling if possible for you, can help many pain patients handle both the invisible symptoms but also the guilt they can feel at looking well, but feeling awful; looking well, but not being well; looking well, but being incapable of doing tasks at which they used to excel.
Doing the Best We Can
We can do our best to educate those closest to us, to help them understand our invisible illness but it is also vital to end our our evaluations of ourselves based on what others choose to believe. Not everyone will understand, as we know all too well, and we cannot allow that to affect our own self-worth.
Next time you are told that you ‘look good or ‘look well’ or ‘don’t look sick’, instead of allowing yourself to be saddened by this and the many other burdens of illness and pain, choose to focus on your own beating heart.
Feel that pulse of life within you. You are important, you matter, you may be burdened with challenges of chronic illness and pain but you still have the final freedom of choosing where you put your mind.
If You Love Someone in Pain
Appearances can be deceiving, and are rarely an indication of health or how someone truly feels. If you love someone who lives with invisible illness, take the time to learn all you can about their condition and listen to what they have to say. Instead of saying, “You look well”, try “You look good but how are you really feeling?”
Your compassion, understanding and genuine care is the rarest thing in the world to your loved-one living in pain, no matter which painful condition they face. Obviously some have more awareness than others but regardless of what you know outside of your interactions, listen to your loved-one. A little understanding instead of judgement or disbelief is the kindest offering you can make.
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