Dozens of articles on Chronic Illness support networks remind us that we are all aware of feeling judged by people outside of the disabled community. But we are less comfortable talking about the judgments exchanged by those of us within the community. Whilst having chronic illness often teaches us huge amounts of empathy, patience, and awareness of the relativity of pain and human endurance, it also teaches us a lot about darker feelings such as envy, and skepticism.

I am someone who actively confronts their limitations. For example, after a decade of denial and spiralling health I have quit: smoking, drinking, caffeine, and self-harming. Through therapy and self-awareness practices I have had help to overcome depression, suicidal tendency, and hypersexuality disorder. More recently I have taken steps to increase my fitness and physical capabilities with a lot of help from supportive friends, and good trainers. This even involved overcoming extreme hydrophobia. I have flown in the face of medical prediction by learning to drive, riding a motorbike, and not being wheelchair bound by my late thirties. These are the accomplishments I feel most proud of, as I feel empowered by doing everything in my capabilities to master my disability. But my approach to my health raises a wealth of negative attitudes both in myself, and in others.

  1. Skepticism

Strangers who doubt the extent or reality of my disability I can deal with. Many deniers will often be reduced to a mumbled apology when confronted with either an explanation of my conditions, or a flash of my blue badge. However, it is from those who are most well versed in illness through their own experiences – either personal, or via close loved ones – that I receive the worst form of judgement.

Many people I know who are ill have told me that my illness can’t be real because I can now do exercise (after medical support and a lot of extraneous suffering), or they look at me askance when I do my daily stretches and strengthening routines. Others tell me my prognosis cant have been all that dire if I am able to ride a motorbike. Or tell me I don’t need a wheelchair on my off days, if I can do sport activities on my on days. To me this is a lifelong experience which extends beyond my health; it often feels like those who cannot accomplish what you can will begrudge you your success. We are just as guilty of forgetting that people are individuals, their experiences of their health is individual, and what one person can accomplish despite their illness is not what another can.

But I am equally guilty of this judgement. I think we all are. I catch myself begrudging those who get priority for being wheelchair(bound) users, as I believe my pain – and therefore my need – to be more acute. I judge those who shy away from enhancing their physical capabilities, who I feel are too cowardly or set in their ways to strive for a better life. I forget that our experiences are unique, our pain, fear, and tolerances are all our own. I also sometimes doubt those who are able to raise children can really be that poorly – just as I berate others for judging my physical activities! In short, I judge people for failing to be able to reach my accomplishments, and judge still others for achieving things I could not hope to. This is as foul as what we experience from non-sufferers and we should all acknowledge our part in this, so that we can apologise for it, and improve our attitudes to each other.

2. Advice

We all turn to our fellow experiences for advice, especially with the minefield that is medication, but while I think it is great to share your experiences, it is never okay to recommend your approach to others. By all means tell them that your experience with pain killer x, antidepressant y, or alternative therapy z was positive, or negative; but never tell someone they should be doing one thing over another, or worse, tell them not to take anything altogether, simply because your experience was different. Your relationship with your drugs is something which should only ever be decided upon by you, and your doctor.

This extends to life advice as well. By all means share your experiences, your approaches, your hacks. These are invaluable, especially to the recently diagnosed. But do not tell others what they should be doing. “You should move to a bungalow so you don’t have to take stairs”; “you should use a shower chair/stair lift”; “you should cut your hair so that it is easier to keep it clean”; “you should not get upset about the cleanliness of your house”… The fact about stress is that it is not universal. You might be free from stress in a cluttered or untidy house, but the distress this causes another may exacerbate their condition/s. You might find great relief in using a shower chair or Stanna lift, but others may feel burning shame and a sense of surrender by doing the same.

The rule of thumb therefore, is that it is always okay to tell people about your experiences and your approaches. It is never okay to offer these solutions, however kindly intended, to a fellow sufferer.

3)  Judging healthy people

I have often laughed, and raged, with other poorly people about the ineptitudes of the able-bodied community (any-one else think there should be a better distinguishing word for typicals, like “cis”?). This all stems from jealousy: “if only I had so-and-so’s body, I wouldn’t waster it by over eating / not exercising / taking drugs”. How dare your healthy partner not only sleep soundly and regularly, but snore all the way through it and keep you awake – when you need your sleep so badly?! How easy your friends find it to raise children and have a job. Bast*ds! I have even caught myself grinding my teeth while watching children play because I am envious of their thoughtless ability to move so freely. It is easy to make these judgments, because the thought of being well is so compelling as to drive us quickly to jealousy and anger. But it is important to stop and reflect that maybe if you had never been ill you wouldn’t appreciate your body either. It is hypocritical to raise anger towards the physically abled who mock us for our limitations, when we mock them equally for their flippant attitude to their health.

 

These negative thoughts and emotions, and others like them, are perhaps more toxic when shared among the disabled community. Amongst able-bodied people ignorance accounts for a lot of their negative attitudes, but we do not have the luxury of that excuse. While our sense of outrage might be stronger when we compare ourselves to those we think are similar, so should our sense of empathy. This is something I know I need to learn. I know that my sympathy for suffering extends further to the otherwise able-bodied community who are temporarily ill – or whose diagnoses are so different to mine, like SEN conditions – than it does amongst those who share illnesses like mine. Perhaps it is because I am more protective of my condition when around fellow sufferers, or perhaps the stories about benefit fraudsters pique make me as opinionated as the next man.

But if I am going to continue to improve myself, and overcome my limitations, I should also learn to overcome my judgment and skepticism of others just as I hope they will overcome their judgments of me.