Self Portrait in Caricature, Quick Scribble style
I make a deliberate effort to approach living with chronic illness and autoimmune disease* with optimism and cheerfulness or at least with acceptance and stoicism. I’m fairly good at it too and I really don’t like to complain, nor to see myself as any worse off than anybody else. It’s a balancing act though because it’s really nice and honestly very helpful to have supportive people in my life who understand, people who truly know what I struggle with, how much effort I make and what my limitations are. It’s not easy to have such people because most people only ever see me for short periods of time with long stretches of time in between, during which I have time to rest and to store up some adrenaline in order to go out for a couple of hours and socialise. In those instances, if I am socialising in a way that is enjoyable to me, I come across as very perky, outgoing and energetic. You have to be quite close to me and see me on a near daily basis to know what my limitations are, to see how exhausted I am and that it is affecting me cognitively and physically, to know that my entire body is aching and some parts are in pain. You have to see me on a daily basis to observe that when I move I am slumped and pretty much dragging my carcass around. And if you do see me that often you will also observe days or a few hours within a day when I appear to have nothing wrong with me at all. I have plenty of energy and ability to get some chores done or go for a short walk, do some shopping or socialise with some friends. I won’t be doing anything that takes long term stamina but what you might witness for a few hours would never give you any clue to the fact that I cannot sustain any energy or concentration for longer. It also won’t tell you that if I force myself to try, if I push myself the way most people are advised to push their bodies in pursuit of physical fitness, I will make myself worse. Perhaps immediately, perhaps tomorrow, perhaps not until I have pushed for a week or a month or a few months. You won’t know that I have symptoms that mimic a virus while not having one, and that I am so cognitively impaired I won’t drive for safety reasons or that I would have difficulty filling out a form asking for my name and address.
Why am I writing all of that here now? I suppose it’s a bit of a rant, inspired by an outing recently, coffee with some acquaintances who don’t understand these things. The person they saw looked normal, spirited, completely capable and they know her to be a person who doesn’t have to work. Without saying it in so many words, statements were made that implied envy of my lifestyle. Misunderstandings about the nature of my income were obvious as well as with how I spend my time. I attempted to correct these without too much dwelling on anything that sounded like self pity. In the end it doesn’t matter what other people think, but it can still be frustrating. I recall the time when I was attempting to work part time, and I would leave work around noon as clueless colleagues commented that they sure wished they could afford to work part time.
I can afford it because I have a home and lifestyle that matches my limited income. I can afford it because I am very lucky to have chosen a career where I paid into an insurance plan which now gives me a fragment of what I would be earning if I could work. I can afford it and I am absolutely comfortable but I don’t have the same luxuries my peers who are working take for granted. And I don’t have the ability to play during all of this free time I have. I spent up to twelve hours in bed, often sleeping nine or ten of those hours. Another several hours are spent reclining on the sofa. Bursts of energy with which to socialise, exercise, go shopping, go for a drive are rare. If I travel, which is uncommon, I have only the energy to go short distances and then rest in a motel room. I can’t sight-see or paddle a canoe down a river. I can’t drive for more than a couple of hours in a day and can’t sustain travel for days on end. I can’t afford to go very many places. I can’t fix up my home much because either I don’t have the money for it or I cannot use my own energy for DIY other than very small projects spaced out over months. I have installed two curtain rods myself and made the mistake of painting my bedroom, which was so exhausting and difficult it would take me years to get my whole apartment done. Committing to long term plans, making promises to myself or to other people that I will be able to get certain jobs done, be in certain places at certain times, these are things I do not manage most of the time. I join no committees, no clubs, take no classes, do not sell my services to anyone because I am unreliable. I cannot even depend on myself.
I don’t like to focus on things in this way. I don’t like to see the negative or take a poor-me attitude but I do get frustrated by people misunderstanding and imagining I have some sort of idyllic life. I get it though, I’ve idealised other people’s lives too and maybe I was quite mistaken about them. If we are unhappy with something it’s easy and perhaps inevitable to look at someone else who seems to be better off. When my illness was undiagnosed and I was struggling so hard to work, feeling exhausted and ill and really wanting to either stop working or change the kind of work I did, really fantasising about being able to be a stay at home wife and mother because I couldn’t do all of that and have a career and excel at both, I envied women I knew with husbands who didn’t want them to work. In normal circumstances I don’t think I would envy such a situation but I was resentful that my husband expected me to work outside the home and for an income because I was struggling so badly and he couldn’t see it. He didn’t value anything I might contribute by staying home so if I didn’t work for pay I was a freeloader. If I didn’t work at the job that brought in the most money I was not being fair. This is what he believed I owed him as an equal partner and perhaps I did. I just couldn’t do it. I envied the women whose husbands were equally opinionated and bossy but who demanded the opposite behaviour and so I do understand when women I know envy me for what they think I have.
I have the luxury of being able to look after my own needs first. This is what insurance buys me. My illness is best managed, and it is not something that can be cured only managed, by lifestyle modification. The modifications are slightly variable. I have the luxury of resting and sleeping as I need, of doing little, of getting some help with the cleaning and of devoting the free time I have to my hobbies which are mainly sedentary but which on the bad days I do not even have the ability to pursue. This is the sort of thing people want of their weekends, and perhaps even of a week long vacation, no obligations, lazy days, stay in pyjamas if desired. I have never been that sort of person. This was never even a desire I had for weekend time but I am fairly sure even the people who do desire this would grow tired of it if it were their life forever. Day after day, year after year.
Those of us with chronic illness need to be heard sometimes, though listening to constant complainers isn’t anyone’s duty. My hope is that you may have gained some understanding of someone you know living with a chronic illness, especially an invisible one. Or maybe you are that person yourself and it helps to know you are not alone. I know that my coffee friends meant no harm and did not even realise the error they were making. I know that for the most part they just accept me as I am, perhaps even like me as I am, and we all just vent sometimes. Especially if we are unhappy with our job or lifestyle. I believe that there is only so much control we have in life, circumstances will sometimes and perhaps often land us in situations we are not thrilled about and when we feel stuck all we can do is spin a fantasy. Maybe it makes that fantasy seem all the more real and attainable if we believe someone else is already living it.
Don’t envy me, but don’t pity me either. I haven’t got the life I would choose but I’m making the best of the one I’ve got. If I can ask for anything, what I want is to be understood.
Self Portrait of me on a good day, as friends usually see me. I am not wearing blusher-don't know why it looks like that in the photo. I look normal in the mirror. Yes, I really did chop my bangs à la Angelina.
* ME is myalgic encephalomyelitis once called Chronic Fatigue Syndrome, recently called SEID ( systemic exertion intolerance disease ) which doesn't seem to have stuck as a name anyone uses.