[This post was originally posted at Hoyden About Town on May 4, 2007.]
This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.
I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense! I felt happy enough, apart from being terrified that there was something awful wrong with me (lupus and MS were high on the differential at the time); there were no clinical signs of depression or somatisation.
This didn’t stop the first specialist I went to, a neurologist, insisting that I must must must be depressed, of course. I was a woman. With a toddler. Of course I was depressed! Just deluded and in denial, as hysterical women so often are. The abnormal blood tests and lack of clinical signs didn’t register in this simple equation: ovaries + fatigue = probably depression. Ovaries + fatigue + motherhood = certain depression.
Thankfully, I got past that, though not without a fair bit of righteous annoyance on my part. Depression would have been just fine by me as a diagnosis. I know how depression is treated. I know it can usually be managed, if not cured. I don’t feel a stigma about it; let’s face it, many, perhaps even most, of my close friends have had depression. But it’s a positive diagnosis, not a wastebasket one. Lesson one: no clinical signs of depression means no depression, people.
I found a GP with a clue, and stuck with her, so happily I’m not without competent, non-judgemental medical care. Sadly, not all people with CFS are in that position.
Discovering Spoon Theory
I first learned about spoon theory when I was poking around reading up about lupus. Christine Miserandino, a person with lupus, was trying to answer a question by her friend. The friend had asked her what it was like being sick – not about her symptoms, but about what it was like being her. Stuck for a metaphor, Christine grabbed all the spoons off the table, and explained that every day, she had a very limited number of spoons, unlike a healthy person who has a near-unlimited spoon supply. Each spoon stood for one chunk of activity. The friend started out with 12 spoons, and had to run through a day, giving up one spoon for every thing she did: including getting up, dressing, showering, and so on. The friend was down to half her spoons before she’d got to work in the morning – and the light dawned. It dawned for me, too.
Every day, every moment, is a tradeoff. Every piece of activity has to be a conscious choice. Normals never have to choose between cooking and cleaning up, between showering and playing with their kid. Never have to think ahead to the weekend, and say “I’m having lunch with a friend on Saturday, so I have to keep Sunday completely free to recover.” Spoons are always my first thought when planning out my life.
An example: Today I changed the bedding. That’s a fair chunk of spoons. I started planning it a couple of days ago, when I knew the bedsheets had to be changed. I have learned from experience that on a bedsheet-changing day, I’m not going to be able to get much other vertical time once essentials are accounted for (personal grooming, lunch, picking my kid up from school). I figured Friday would be a good day. We could have our weekly takeaway dinner, so I’d be able to steal the cooking spoons. And Friday Night is Movie Night for the Lad, so our evening will consist of hanging around on the bed, watching something with dinosaurs and munching popcorn, a low-spoon activity. I also checked forward to our Saturday plans: no excursions, so I can use up all my spoons on Friday instead of keeping some in reserve.
So I planned a couple of days in advance; I just changed the sheets; and now I’m horizontal. And wondering, just a little, how I’m going to get the energy to do school pickup today – maybe I’ll drive the block to school to save those couple of spoons for tonight? I’m not sure yet.
I used to spontaneously say “Oh, I’ll just quickly change the sheets now”, somewhere between getting home from work and going out for a night on the town. No more. Life has changed. It’s taken me two and a half years of being sick to get to this point of juggling my spoons relatively effectively. As recently as six or eight months ago, I was still on the push-crash roller-coaster, using up all my energy on one activity without thinking forward to the next, and spending days on end crashed out from not pacing thoughtfully.
Some people who have never been through this view the spoon-rationing as “giving in” to the illness. I guess these are the same people who subscribe to the contorted, fucked-up cognitive-behavioural causality model of CFS: they think that I’m sick because I’ve convinced myself that I’m sick, and that I have limits simply because I’m spending my hours and my days working within my limits. What they didn’t see was the many months I spent denying that I had limits, busting them, and paying out for it. What they are looking at now is survival, not surrender. I’m gleaning the positives from an unpleasant situation; I’m eking out a life both happy and worthwhile, from the boundaries I’m stuck with – just like anyone else on this planet does. I don’t need pity, but I do need consideration.
Two Things To Understand About Me
Before I leave Useful CFS Links, I want to drop you another link: the Open Letter to Those Without CFS/Fibro. A couple of these “Please understand”s really resonate with me:
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
Contemplating Disability: What Counts?
The line between “chronic illness” and “disability” is a blurry, wobbly, contested one. Many people seem to think that “disability” is about having a mobility impairment and using a visible mobility aid. People in wheelchairs “count” as disabled; people with invisible disabilities don’t. Some people consider “disability” to be something a person was born with, or acquired catastrophically and traumatically. Considering the idea that I’m disabled has been a difficult one for me. Though I’ve worked hard on combatting cultural devaluation and misunderstanding of disability and disabled people when it comes to others, for some reason turning the disability light on myself has been a challenging step. It took me nearly two years of being sick before I applied for a disabled parking permit, and I cried at the doctor’s appointment getting the parking medical form filled in. I might intellectually know that it’s not “surrender” to accept the D-word, but gosh, it feels like it. Why?
So I pass. Most of the time, I pass. I’ve used the parking permit maybe four times, because I don’t want people looking at me, staring because I’m not in a wheelchair, conspicuously inspecting my car looking for a placard, heckling me and asking what my diagnosis is, just as that TV current affairs show encouraged them to do last year.
I go to social events, and pass. Sometimes. There are some places I just can’t go, if there’s nowhere comfortable to sit or lie down, or if there’s no hard shade (I’m sun-sensitive). I find a chair or a picnic rug, and sit, and chat, and Don’t Mention The Illness. People I don’t know see me sitting still and asking friends or family to bring me a drink or fetch me something I need, and I worry about them wondering why I’m so imperious and lazy. But I work hard on not caring.
Passing is exhausting. So is disclosing, coming out. It all uses emotional energy – “Will they think I’m faking?” “What words will I use to explain?” “What if they don’t believe me?”
Invisible Accessibility for Invisible Disabilities
The first time I truly realised how clueless people are about disability and access was at a local Apple dealer. We needed to do a bit of paperwork, and I found myself standing at a desk, with the computer guy seated on their other side of the desk. I looked around for a chair, and couldn’t find one. I asked “Could I have a chair, please?”, and was told that they don’t have any chairs for customers. “I’m not feeling well,” I said, “Could I please have a chair while we do this paperwork?” and was again rebuffed. “This isn’t great disability access”, I tell the dealer. He looked at me as though I had two heads, and snapped, “Disabled people bring their own chairs.” I explained that not all people with disabilities use wheelchairs. I was then subjected to a lecture about how sometimes disability is all in people’s heads, and if only they would get out and about more, they wouldn’t have a problem. What an monumental arsehole.
I’ve spent the last nine years getting a Bachelor of Arts degree. The last two years I’ve done in off-campus mode, though my university doesn’t officially provide such a mode. This is thanks to several absolutely fantastic lecturers who were happy to work with me, discussing tutorial material by email, accepting emailed PDF assignments, allowing flexible deadlines. I thank those people deeply. And the lecturers who snarkily refused to contemplate flexible delivery can nick orf. I thank my wonderful partner, who fetched and carried the books, videos and paperthings that couldn’t be transferred electronically. I thank the librarian aide who helped me out with items for pickup, and I thank the Student Services Office, who somehow find their way around the convoluted university systems.
Most of the time.
Between going into off-campus mode, I spent a short while being sick but attending classes. This was before I got my ACROD permit, so I needed to apply for a university disability parking permit and library accessibility pass. The application system was so ridiculous as to be laughable, and my feedback about the system, as far as I know, was icily received and promptly ignored. I present it here for your amusement: How To Get A Uni Parking Permit, for People With Chronic Illnesses And Mobility Disabilities.
(Background information: the campus is fairly spread out, about a kilometre from end to end. This is taking place before I have a permit, so I can’t park close to the buildings and offices.) We started at Student Services, not too far from the south end of campus. Having made this appointment specifically to get the access passes, I thought I was going to just sign something and pick them up. I don’t have a huge number of spoons this day, and just driving to uni has been pretty tiring. But no. I meet the Disability Officer, and she says a couple of things, then says we need to go up to the Parking Office. At the north end of campus. “What?” I say. She says “We need to go up to the parking office.” “What the fuck?” I am tempted to reply, but I end up just doing the two-heads-stare. She twigs, and says, “Oh, you can drive, I’ll walk and meet you there.” So I make my way back to my car, and drive up to the Parking Office, try to find a space (paid only, for non permit holders), and go to the office. There’s no seating, no low counter; you must stand at a high counter to get served. Exhausted, I sit down on the floor while waiting, and bystanders start backing away from the crazy person. Getting up, when the time comes, is a struggle. The parking permit is sorted.
I’m wondering, at this point, what happens with the library permit. “Off we go”, she says, “We need to go to the library now.” I take a breath, steel myself, and drive back down to the library, in the middle of the campus. Parking is a fair way from the library entrance, and there is a large flight of stairs to get up. Ramp access to the library for non-permit-holders is around the other side of the huge building, and I don’t have the energy to walk around there. So I wait, again with no seating, outside the locked disability access entrance for the Officer. We meet, and go in. There’s a service counter on the library ground floor where they dispense disability access cards. You guessed it: no seating, and a high counter, standing room only. I ask for a chair, and the service person disinterestedly points me to a corner of the next room where there is a stack of chairs. I am in spoon deficit by now, and have a choice to make: do I stand at the counter, or do I go and get the freakin’ chair myself, so I can sit? I don’t even have the energy to go into an explanation of why there should be seating, and how completely inappropriate it is to tell someone at a DISABILITY SERVICE COUNTER to get their own damn chair. I get the chair, and slump down onto it. There is a wait, and eventually a card eventuates that gives me access to the locked elevator system in the library, and the library room with disability facilities in it, including various bits of accessibility equipment, comfy chairs, and a mattress to lie on.
I have a point, I think, to all this rambling, and that is: Stop and think. Use your brain. Encourage people around you to use theirs. Get past the wheelchair model of disability access. Just as people who use wheelchairs shouldn’t have to go to the back of a building and use a freight elevator, people with invisible disabilities need to be considered when planning buildings, access, and service provision. People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day. Businesses need to do some basic staff training about the variety of invisible disabilities. Consider the whole range of somatic, sensory, and neurological issues and atypicalities, from CFS to cancer to dyslexia to deafness to autism to mental illnesses. Different people have different access needs; mine are really very simple, and start with access and seating. Don’t lock the elevator. Don’t make people walk the long way around to get to an elevator or escalator. Put in lots of chairs, benches, a low service counter for chairs and wheelchairs and little people, install an armchair in a corner for people to take a moment. This goes a long, long way to letting an ill person access your facilities.
Oh, and don’t tell them it’s all in their head.
6 thoughts on “Stop and think: invisible access for invisible disabilities”
I cried when I read this post. Your description of CFS, of invisible disabilities, of the judgments, are all so familiar. My mom developed CFS more than 20 years ago, when I was 12 and my younger brother was 9. (My older siblings were in high school or beyond.) For years, all she (and my siblings & I) could say was that she was tired, that she didn’t feel well. There wasn’t language to describe what she was going through, nor was there much sympathy for her limits–just a lot of judgment by others in my small community for failing to measure up as a (single) parent. Their judgments communicated to me that I was neglected, unworthy and subject to pity, complicating both my relationships with those adults, who my brother & I often relied on for care, and my relationship with my mother, who I loved but resented for “making me” do so much of the adult work of running a household: cleaning, paying bills, cooking, grocery shopping, laundry, keeping tabs on my younger brother’s whereabouts, taking extra jobs to help pay bills, etc. I interpreted her need to rest as “checking out” and in my adolescent self-absorption, assumed she didn’t want her kids anymore. The ableism all around us reinforced my beliefs. I got so used to taking care of myself that during her rare moments of higher energy and engagement, I would get angry, feeling like she was “picking and choosing” her parenting moments. I wanted stability and she couldn’t give it. Her guilt and my resentment made for explosive interactions. Talking about the effects her CFS had on all of us wasn’t something any of us could do at that time.
Mom manages her CFS fairly well now, but it took years for her to learn how to juggle her spoons without crashing every weekend, years for me to accept her limitations as simply part of life with my mom. Ten years ago, she left my college graduation ceremony early to go and rest. My dad and stepmom made snide comments. As a teenager, I would have internalized their words. Instead, I told them she had a chronic illness, it was important for her to rest, and it didn’t hurt me any, so they didn’t need to worry about it. When mom later apologized for leaving the ceremony, I told her it was no problem: what mattered to me was that she showed up that weekend, and got to see where I had lived for four years. She had already driven 12 hours with my younger brother to get there; of course she was tired! Heck, how come she wasn’t on the floor yet? She laughed and said “Oh, I’m getting there, don’t worry!” and dramatically collapsed on the couch. I know now to have quiet places with comfy chairs and a couch or bed for her to rest and retreat, especially if it’s a large group of people. If she wants to sit and chat with me and my siblings while we cook, no problem. If she wants to cook with us, we can all sit at the table to do the prepwork. And if she wants to make a meal for her children or drive me somewhere, I need to respect that *she knows best* how to take care of herself, and trust her decisions about how to spend her spoons.
For me, being able to understand chronic illnesses’ overlaps with disability was what made everything click: mom couldn’t put life on hold to “get well”–this was her life. And she needed to live it as fully and happily as she could within the limits of her physical and emotional energy. I didn’t know anyone using “disabled” to describe CFS until recently, but it was what made sense to me: she didn’t need “help”, she needed access to do for herself. She needed to be able to say “No” or “Can you please do X?” without guilt, shame or judgment. And she needed me to support her by talking to her and to others about her CFS as something normal. Because for us, it IS the norm.
Thanks for writing this. I’m definitely going to print out your post and send it to my mom.
Hi Evangeline – thankyou for your comment.
What you’ve described as your thoughts about your mum, growing up, hits on one of my very deepest and scariest fears as a parent. I’m really trying to bring my kid up with a bit of knowledge of disability issues, but can a first grader have the cognitive and emotional maturity to work outside of the “it’s all about me, something bad is happening, therefore it must be my fault” mindset? I don’t know. So difficult.
.-= lauredhel´s last blog ..Exclusively breastfed baby denied insurance unless he goes on a diet =-.
Thanks for this post, L. It’s awesome. Original meaning. 😀
Sometimes I use the things you write about as a model for how to make my life a little easier, by watching out for limited access and doing what I need to get it.
Thank you for writing this. Aughhh! The internal scream I have when I hear “you are sounding better” or even worse “you are sounding like your old self”.
I am always myself, I want to scream. Thanks for putting into words what has troubled me for ages.
Thank you for this post.
My father was finally diagnosed with CFS sometime around 1995? ’96? I don’t remember exactly because I was only 10 years old at the time, feeling burdened with tons of live changes associated with this illness (his wrongful termination, moving back to his hometown where we could afford to live, my SAHM working while Dad stayed home and slept, etc. etc. etc.) As I grow older and hear more and more stories from people with CFS and their families, I am so struck by the commonalities.
It is actually sort of funny – my father lost vision in one eye due to an accident a few years ago, and he now wears those stereotypical wrap-around sunglasses to protect his remaining eye (which has become sensitive to light). Now he has a visible “disability” (although really his depth perception is the only thing affected – he still drives and such), some people are much more accommodating than before!
Last night I went to a CBT therapy group. The organizer told us all to do an extra 10 minutes of exercise a day. I raised my hand and explained that because of my invisible health condition, I couldn’t. TWO SEPARATE PEOPLE in the group of ten took it on themselves to say, in succession, “Oh, come on, surely you could exercise for ten minutes! It would be good for you!” I told them a little — too much for my comfort — about my physical condition. I left steaming. Note that the therapist didn’t intervene for me, and it didn’t occur to me until later that she should have.
Luckily, today I found an individual CBT therapist, so I won’t need to go to that group again.
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