On Living with Pain and Taking Care of One’s Self
I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.
Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.
Insurance Company Revokes Depressed Woman’s benefits over Facebook photos
Mental illness is no exception to this rule: people think they know what it looks like, that they can spot a person with a mental illness a mile away, and that if a person doesn’t live up to those expectations, they’re either seeking benefits they “don’t deserve,” or seeking attention. And with regards to depression specifically (as it’s the topic of the original article, and my greatest knowledge base), they tend to think that if someone isn’t spending all of their time crying, frowning, or refusing to get out of bed, they can’t possibly have it.
Your Scooter Means You’re Poor
I have learned that differently abled means poor to many. It means that you are not working. It means that you have no identity or interests. I understand for many being differently abled means poverty because we live in a world that does easily make the accommodations that are necessary to participate in paid work. Knowing that this is the case, why does the stigma attach itself so ferociously? If a person is unable to work because of a lack of accessibility, why do we feel the need to persecute them because of the way our society is designed?
When I tell people that I write, the answer is usually that it makes sense. It does not occur to anyone that I chose this because of a love of writing and sharing ideas. Writing is something that I was interested in from the time that I was a small child. Because I am doing it, it certainly is not real work. Such ideas do not attach themselves to a friend of mine, who makes his living freelancing in this area. Sitting together, people will invariably ask him a multitude of questions, ignoring me completely. It is understood that he chose his work out of love and not convenience.
More than two dozen seniors at Lincoln University, in Oxford, Pa., are in danger of not being able to graduate this spring — not because they’re under disciplinary probation or haven’t fulfilled the requirements of their majors, but because they were obese as freshmen.
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It might sound like a joke, or a violation of individual rights, but James L. DeBoy, chair of Lincoln’s health, physical education and recreation department, said he sees it as his “professional responsibility to be honest and tell students they’re not healthy.”
In the news:
Disability turns laughing matter in Channel 4 comedy show [Headline is really misleading past the first few paragraphs of the article] [Also, oh gosh! People with disabilities don't all agree on everything! I love that they spelled that out in the article, but it always bothers me that this is considered news.]
Penned by writers from Skins and The Thick of It, the series features six disabled characters marooned on an island, including a blind man, a woman with cherubism and a paraplegic man. Each character is played by a disabled actor with the same disability, and one complains about the number of non-disabled actors portraying disabled people.
…Liz Sayce, chief executive of the Royal Association of Disability Rights (Radar), says: “There is likely to be a storm of comment from disabled people and non-disabled people alike over Cast Offs. Some disabled people will find it funny and real – portraying disabled people as adults who swear, drink and have sex. A real break from covering disability with kid gloves, or not covering it at all. Others may well find it offensive.”
I just wanted to pop by and say thanks so much for the link love. Reading this blog gives me the courage to keep writing about my disability.
I also want to pop in with a thank you. Honestly I can’t describe the silence I suffered until I found your blog. You are heroes to me – I live with chronic pain, but come from a family where we don’t talk about it, my partner is caring but minimizes and won’t understand… it’s lonely. So when I found your blog, I was brought to tears – you are amazing, truly amazing – I want you to know you’re making a tremendous difference, at least with me, because I don’t really feel alone anymore.
Some day I’d like to have a conversation about disability and employment that doesn’t make me want to scream at all the helpful comments about just going to Human Resources or Management and asking for the accommodations needed like companies are eager to buy expensive-ass desk chairs and work with disabled employees’ needs or some shit. They just have to be asked! It’s a fight to get a forty-dollar ergonomic keyboard and a twenty-dollar trackball. Eventually you learn to stop asking and to stop wanting which is probably where they want us to go with that.
When my left hand wasn’t working — there was a hole in the middle of it and wire holding the shards of metacarpals three and four together — I asked my employer for a chordboard so I could type one-handed and keep working. I was told that being able to use two hands and pick things up with them was a core job requirement and they essentially weren’t going to accommodate shit. I got to resign from that one and gained a big hole in my résumé to explain. Another company I worked at for five years became progressively less understanding about my need to go to appointments with medical professionals and demanded that I work eight to five daily. I was expected to use paid time off (and then unpaid time off when that ran out) for everything instead of moving things so I still worked forty hours a week, just not the same eight hours every day.
Employers hate the Family and Medical Leave Act and make things really unpleasant for employees who use it. Temporary and part-time workers don’t really have access to it at all.
Have I mentioned that I’ve had a whole week of vacation in ten years? (I’ve mentioned it.) When I started telling my family I was looking at not working when this job ended (which I still am) the first thing they asked me was what I was going to do with my time. What were my plans? The subtext — in some cases it’s actually the text — is that if I’m not working I’ll go crazy again. Damage myself again. I don’t have plans. I want to try taking care of myself. Resting. That’s all I’ve got planned. I don’t plan to write more or go back to school or anything.
It’s not good enough.
Renee, I always find your posts about disability insightful – I’m so glad you write them. (I’m just sad that I’m always linking them three to five days afterward, but I do RR in bursts around my schedule, so everything’s out of date.)
Penny, I’m so sorry things are so difficult. The disability-related blogosphere is very awesome and accepting, in my experience, and I hope that you find even more writing that speaks to you.
Ugh, I’m kind of laughing in a gallows humour way at the article on the obese class at Lincoln…
I’m obese by their standards. Which is funny because most people think I weigh between 50 and 70lbs less than I actually do. My doctors even tell me I’m not even overweight. But, you know, I’m too heavy! The chart says so!
Samanta, to hell with the chart. Just 1 more thing we have to measure how un-right we are. I’ll trust them all again when they find some measure that incorporates the full spectrum of human experience and life.
It’s lovely all the comments on the one about obesity, where people go “It’s just unhealthy and if you’re fat you shouldn’t make excuses…” etc. As if that’s even the effing point. I noticed a lot of “If you’re unhealthy it’s your own fault,” as if most ill health is caused by things people could prevent in the first place (and even if they were…) just.. gah.
I recommended this programme (Cast Offs) to a blind friend who is also a wheelchair user. This was her response: