Why disability is the least of my problems when struggling to cope with disability

I think I was about nine when the realization struck that symptoms like pain, fatigue and twenty bone-deep oozing ulcers on my hands were not the issues to overcome in order to have any semblance of a happy, fulfilling life. I have Raynaud’s and in the bitter cold sub-zero temperatures of cold winters in a country with no central heating, my hands didn’t just turn white and red (they also did that and coming in from the cold made me cry in pain), they also had little blisters that erupted so close to each other that when they ruptured half a dozen would form one big ulcer that just didn’t heal.

Every winter morning my hands were re-bandaged, prescription lotion applied and then I put on a pair of black fingerless gloves that wouldn’t come off until night time and another pair of winter gloves over the top for the drive to school. In later years I was three hours late due to doctor’s orders. The only way they could figure out to make sure I didn’t lose my hands to the cold was to keep me indoors until temperatures rose significantly. I sat at home in the mornings whilst my whole family was at school – both parents were teachers – and worried about going.

My class mates and friends weren’t mean and I was lucky to always have friends waiting for me in the car park when I finally got there, but nobody was really comfortable around me. Least of all myself. By noon my gloves would start to soak through with yellow ooze and blood that crusted and stuck the dressings and gloves to my hands. I smelled like anti-septic, sweat and dry blood.

Some of my class mates’ parents felt that letting me come to school for three hours every day instead of six was a sign of favouritism. Some of my teachers felt that I created additional work by not conforming and fitting into the system. Mostly though, any negativity was usually caused by either a lack of information and people drawing conclusions on the tiny part of my life that was visible to them or just general ignorance and the inability to adapt to situations that broke the mould. I was caricatured, I still am.

What is Raynaud's
What is Raynaud’s

My health issues are “complex”, my family is “complex”, our situation is “complex”. In reality, this means that most people tend to only take a small part of my life into consideration when making decisions about my life. It also means that nothing ever runs on schedule, that most things that surround me are chaotic and people resent me pretty quickly for forcing them out of their habitual patterns. None of these things are by design or choice.

I didn’t choose to inherit EDS, I didn’t choose the dozens of complications that arose from my stretchy collagen and I most definitely didn’t decide that being disabled as a result was a desirable lifestyle choice. None of that matters though. Just like I cannot separate my life and my personality from my condition and its resulting impairments, other people usually cannot draw a distinction between the things I cause by intent and the things I have no control over. I make people’s lives difficult and that makes me a difficult person to deal with.

I try not to take it personally. I wait, patiently, through the inevitable delays that accumulate around me as people try to figure out what to do with me and which box to shove me into. I wait whilst everyone rants, complains, stalls, evades and avoid dealing with me or my issues. I do my best not to take anything personally. I am a great believer in Hanlon’s razor.

On a magnanimous day, I quote Goethe: “…misunderstandings and neglect create more confusion in this world than trickery and malice. At any rate, the last two are certainly much less frequent.”  (The Sorrows of Young Werther, 1774 – Johann Wolfgang von Goethe)

On days where I need a little humour and feel a small sense of superiority, I go with “Never attribute to malice that which is adequately explained by stupidity.”

Quite often, people do not mean to be mean. Big, lumbering government departments are a tangle of bureaucratic knots with red tape stretching into infinity. People get frustrated. I know I do. Then they get angry. I know I do. And then, in my experience, they either act impulsively or stop to think things through. I try not to let rash emotions colour my decisions.

Nine year old me went to school with a smile on my face even though I was biting back tears. Twelve year old me, seventeen year old me, twenty two year old me and thirty five year old me did and do the same thing. I believe in kindness, compassion, autonomy, independence and I don’t want to be an angry, bitter, ball of resentment by the time I turn forty or fifty or sixty. So I let things go. I forgive. I try to forget. I choose to believe that people do the best they can and I do my best to always give people the benefit of the doubt. I believe in education not confrontation.

I am however, also a rather stubborn and determined kind of individual. I refuse to give up on the idea that I can live the life I want – go to work, have a family, make it through many consecutive days without worrying about security and an uncertain future.

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I want to get better. It’s extremely difficult to pull yourself up by your bootstraps. Today is another dreary day, but that’s okay because the secret to happiness and fulfillment doesn’t lie in the things I have, or the things I am capable of doing or in health or how well I happen to feel. It is hidden away in the little things. The flower just starting to peek through the soil by the window, the cup of warm decent coffee steaming next to my keyboard and the sound I laughter I hear every day.

I keep a mental image in my head of what life should be and over time that image changes to be filled with the anxiety of failure. I start to see things I want and don’t have – a paycheck! a job – the things that will buy me true independence. I try not to indulge myself and instead, notice every day, in any moment, the good things that are everywhere around me, just waiting to be appreciated.

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