We all know someone whose illness is their identity. They are their sore back, their migraines, their intolerances. Their life is defined by it and limited by it. Meals, holidays, chairs, beds are all dictated by the illness and the person underneath the illness becomes shrouded by it. I once met a girl through my work, who until this, was my only experience of knowing someone with chronic fatigue. She was not the sufferer, it was her sister and I was trying to organise a holiday for them. Her attitudes were slowly exposed as we discussed the things they ‘couldn’t’ do and the conversation spiralled downwards as the suggestions I made just seemed to be feeding her disgust with her sister. She was angry at her sister’s limitations and I remember disliking her attitudes. Perhaps though she saw her life as being limited by this, and was also angry at having lost a sister.
I don’t like to refer to myself as having chronic fatigue, by the way. The stigma of the words hang heavily and also doctors won’t diagnose until you’ve been stuck with it for over 6 months. But it honestly describes way I feel. It’s fatigue and it’s really bad, but I guess calling it ‘really bad fatigue’ doesn’t have quite the same serious ring to it? I don’t feel like it’s my identity. So far I have managed to convince myself that I have made choices in the face of irrefutable knowledge that this is the best and only path available with my lot in life, and while it wasn’t the path I would have actively chosen I am rolling with it.
But still I hesitate to use the term… People wince when you do. Did you know this condition was, for a while, referred to as ‘Yuppie flu’ because it was prevalent amongst overworked white people (perhaps in shoulder padded pants-suits)? The latest movement calls for it to be named myalgic encephalitis – because that sounds like something serious right?
Changing names won’t change people’s attitudes.
The stigma of the condition hangs heavily on those with it. Will we one day be appalled at how society has treated people like this? Think of people born with disabilities and how they used to be treated compared to now? The word ‘disabled’ is such a minefield these day, I’m not actually sure I can use it here without causing offense. The word itself means ‘having a physical or mental condition that limits movements, senses or activities’ but yet the meaning attached to the word by people, is much heavier and hence the discussion around reclaiming it or replacing it with words such as ‘differently able’ or ‘handy-capable’. My Dad had a physical condition that limited his movements for 35 years of his life and yet I never heard the word disabled used by him or anyone around him.
Even though the word has limitations we all know of people who have overcome disabilities to triumph, and used their disability to inspire them to greatness. Made their disability their positive identity. Think Kurt Fearnley, the wheelchair marathoner and Oscar Pistorius (before he committed a crime). We now have Paralympics all around the world; can we foresee a day when we have the illness/fatigue championships? Not to make light of the achievements here but it is clear in society we try harder to accept people who ‘were born that way’ or ‘had an unfortunate accident’.
No is the answer, because we don’t have a common meter or understanding of how people feel. Limited in movements, senses or activities is definitely how I feel right now but I wouldn’t use the term disabled even though one of the common side effects of a virus like Parvo is pain that presents like nerve damage. The description of it here is the best I’ve come across when trying to explain to people.
Leg symptoms often include difficulty walking or running; a feeling of “heaviness” in your legs; finding it takes a lot of effort just to climb the stairs; stumbling or tiring easily. Muscle cramps may be common. In the arms, you may find it difficult to carry groceries, open jars, turn door knobs or take care of your personal grooming. A common frustration is dropping things. Numbness, Tingling and Pain. Sensory nerves, when damaged, can cause various symptoms. Early on, there may be spontaneous sensations, called paresthesias, which include numbness, tingling, pinching, sharp, deep stabs, electric shocks, or buzzing. These sensations are usually worse at night, and sometimes become painful and severe.
And yet no one seems to get it. At first I thought perhaps it was because they hadn’t experienced it but we are human and most have empathy and can relate. If you asked anyone about the pain often reported by amputees in their missing limbs, people will have heard of phantom limb pain and will accept that it’s a medical condition EVEN THOUGH you can’t see the limb.
The most common comment I get is ‘You look fine’ which I would brush off, not being sure why, until someone I know who accepts my experience as real, the other day said ‘You look good’. The difference in how this made me feel was amazing. Ok, so maybe I’m haggling over a word, but the suggestion behind ‘fine’ is much different to ‘good’ and so many of the words I’ve heard lately have hurt more. Management accepted my resignation with a polite ‘we wish you were staying’ and ‘whose next?’ but you can’t really blame them, as their job is to manage. I’ve had many people say ‘How wonderful, now you can work fewer hours.’ Don’t you agree most people would rather work fewer hours? However add an illness to deal with in your ‘spare time’ and you’d all re-think it.
The most support in my life has come from the group of five people I work day to day with who have never judged but approached every development with acceptance, discussion and a ‘lets work out how we can do this together’. Even when I gave them a day’s notice that I would no longer be leading them to the finish line, they all said ‘We understand’ and ‘You’re staying here with us though right?’ Even though this has been hard, they have chosen to still associate a positive identity with me.
When a positive identity is associated with your life, you have no problem embracing it, but what if it’s a negative one and what do you do if it was put there by someone else? How do you not place identities onto other people? Tolerance and acceptance are just words, same as fine and good but how they manifest in life makes the difference to whether or not an illness becomes your identity – whether you chose it or were labeled.