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invisible illness

For some reason the phrase "invisible illness" is reminding me of an anecdote (possibly apocryphal) about one of the first attempts to create a computerized translation program. They input "out of sight, out of mind," translated it into Russian, translated it back, and the result was "invisible idiot."

So there's a meme going around. It's from here. I'm copying it below. Some of my responses are criticisms because some of the information I'm invited to provide strikes me as none of anyone's business, or irrelevant to any illness or disability I have ("My favorite medical TV show is"?). Also I don't like the ways some of the items are worded because they are within a certain framework about how to interpret one's experience, and the framework doesn't quite work for me.

30 things, some of them having something to do with how my particular body and mind work, and some of which might fall into the category "Invisible Illness"

1. The illness I live with is:
There are things wrong with me, some of which have medical diagnoses and some of which don't. I don't think of them as "illnesses" (to me that implies something infectious or out of control, and I don't have any such things at the moment). What they are are body parts and brain parts that don't work the way they used to, or don't work in ways that my society considers compatible with "full health."

I have mood disorder (brain chemistry makes some aspects of life difficult or painful for me), sleep apnea, diabetes type 2 (pancreas and insulin regulation don't work the way they used to and this is causing long-term damage to my body), and it's painful for me to walk (this is mainly a body mechanics issue. Arthritis is involved, but otherwise I don't have any formal diagnosis). Also I have a weird sleep schedule, and there are medical names for this when it is a problem. My life is set up so it isn't a huge problem except that the OH doesn't like it.

2. I was diagnosed with it in the year:
I've had most of these issues a long time. Mood disorder since I was a kid, the others since my late 30s.

3. But I had symptoms since:
I had symptoms of most of them before I let the medical establishment check them out and name them and treat them. For me, unlike many people who have invisible illnesses, it wasn't difficult to reach a diagnosis (e.g., I didn't have problems with doctors not believing me, etc.). It was a matter of getting to the point where I felt I wanted to check it out with a doctor and see if any treatments were available, and at that point I went to a doctor about it.

4. The biggest adjustment I’ve had to make is:
Each of these things involves some adjustments or management. For the ones I've had my whole life, they affected how I interacted with the world, but to call that "adjustment" would imply that I had interacted differently before, or that there was an objective "normal" I was measuring myself against. E.g., I had a mood disorder and I had little idea what it was like to be without one. When it got treated, some things changed, but I still don't know if I was "normal."

Anyway, the mood disorder means I get overstimulated easily so being very busy isn't good for me. Also it means I limit my social interaction compared to some people. When I am feeling anxious I can push past it to some extent but it takes a lot out of me to do so.

The diabetes means I have to be careful not to get low or high blood sugar, so I have to test my blood sugar and be aware of the feelings of having low blood sugar so I can treat it. I have to be careful to keep treatments for it in the car, so I don't go low when I am driving. What it doesn't mean is that I have to avoid eating entire categories of food. A lot of people think I do.

The sleep apnea means I have to wear a mask when I sleep and carry a machine when I travel.

The walking pain means I have to think a lot about how far I can walk, whether I can find parking nearby enough, whether there will be adequate seating, etc. I've had to limit doing things I like such as going to fairs and festivals and museums because of these issues. Also it affects the people I spend time with.

The sleep schedule means I have to be careful not to schedule a lot of early morning activities.

5. Most people assume:
I maintain a deliberate ignorance about what most people really assume. I have beliefs about what people assume, but the beliefs are nasty, that people think I'm lazy and out of control and refuse to take simple steps to fix my health. If I let myself act on those beliefs, I'd never interact with anyone and I'd never go among strangers. So instead I deliberately interact with people as a human being who deserves their respect and accommodation and who will offer the same in return. And mostly if people have ugly beliefs about me, they don't tell me.

6. The hardest part about mornings are:
For much of my life because of my mood disorder I have felt a lot of dread upon waking up in the morning. It has little to do with whether anything meaningfully scary is actually happening that day. The aches and stiffness that I have for a short time after getting up are not a big deal compared to the dread.

7. My favorite medical TV show is:
Emergency Vets, but I have no idea what this has to do with my health status.

8. A gadget I couldn’t live without is:
I probably could live without them for a while but my quality of life would be much poorer and eventually my health would probably be permanently damaged: BiPAP machine, blood glucose meter. Having a pill minder helps a lot too. A cane and a portable seat come in handy. I'm thinking of getting an electric scooter.

9. The hardest part about nights are:
Nights are just fine. It's annoying to have to schlep my BiPAP machine when I travel. The OH would prefer me to go to bed earlier.

10. Each day I take __ pills & vitamins. (No comments, please)
The parenthetical implies there's something shameful about taking a lot of pills and vitamins, such that one has to defend against possible shaming in advance. I hate the societal attitude that taking a pill means you're a failure and taking a lot of pills means you're a basket case.

I do understand people not wanting to feel dependent on pills, because there are a lot of hoops to jump through to get prescription medicines and it's scary to feel dependent on the good will of the medical establishment, and the health of one's bank account, to provide prescriptions one might need. I dislike it when people's personal dislike of pills turns into judgement about other people needing pills.

I also understand that there are pills to treat things that some people wouldn't consider a health condition (e.g., there's now a pill for people who want longer eyelashes) and that pills are sometimes overprescribed and that these are problems in my society. I dislike it when people's concern over overprescription and overmedicalization turns into judgement about other people needing pills.

I also dislike it when people brag about not taking any pills. I consider that my own problem, though.

11. Regarding alternative treatments I:
Mostly don't pursue them at the moment. I've tried supplements to reduce my blood sugar and they didn't seem to help. It's not real clear to me what counts as an "alternative treatment." This question assumes that Western medicine is the only "normal" kind of treatment when a person's body doesn't work a certain way? Is exercise an alternative treatment? Body work such as Feldenkrais or Yoga? Meditation?

12. If I had to choose between an invisible illness or visible I would choose:
I have invisible health conditions and I have a body size and shape that most people assume is a health condition but it isn't. They both cause problems. I would choose to have problems that I can manage, whether they might count as invisible or visible.

13. Regarding working and career:
I suspect most of this is personal preference rather than directly due to my health conditions (I like having a lot of control over my hours and my workload and I hate micromanagement and I hate "career clothes.") But I prefer to work freelance from home. It helps me to have lots of natural light, which was hard to come by in an office. I do my best work late at night. It's uncomfortable to move around a large corporate campus. Lately I find that I am unhappy if I need to work full-time (e.g., 40+ hours a week). I don't know whether this is attributable to any of my health conditions.

14. People would be surprised to know:
I have no idea what people would be surprised to know. You tell me.

15. The hardest thing to accept about my new reality has been:
This question implies there was a big shift that happened suddenly. There mostly wasn't. The thing I find the most frustrating is having limited exercise choices.

16. Something I never thought I could do with my illness that I did was:
I can't really think of anything; I didn't have a lot of preconceptions about my health conditions before I got them, and now I just do what I do.

17. The commercials about my illness:
There are commercials about mood disorders and maybe about diabetes. I pay as little attention as possible. There don't seem to be commercials about sleep apnea. I find that interesting. I guess the makers of CPAP machines don't have as much money as drug manufacturers, who seem to be responsible for most of the commercials about illnesses.

18. Something I really miss doing since I was diagnosed is:
What I miss doing has nothing to do with any "diagnosis." It has to do with what I am capable of. I miss long walks.

19. It was really hard to have to give up:
Feeling free to go on outings without worrying about my mobility and pain levels. (Although honestly I've never been completely free in that way; I've always felt that there were limits to my mobility compared to more athletic/differently shaped people. But my limits are greater than they used to be and that's hard.)

20. A new hobby I have taken up since my diagnosis is:
Mostly my hobbies were not taken up due to any diagnosis or health condition, but I did take up knitting partly due to my mood disorder. I have social anxiety and I wanted a craft that I could engage in at parties so I wouldn't feel awkward at parties.

21. If I could have one day of feeling normal again I would:
I have never conceived of myself as "feeling normal" so I don't know what such a day would be like. Sometimes I think of times where I felt less anxious or depressed. Sometimes I think of being able to just lie down and nap without putting on my sleep mask. Sometimes I think about long walks.

22. My illness has taught me:
I don't know if it's my illness or life in general, but I've learned not to think in binary terms, I've learned to take people as they are, I've learned that people are more willing to be accommodating than I assumed. I've learned to go at my own pace.

23. Want to know a secret? One thing people say that gets under my skin is:
Let's not go there, OK?

24. But I love it when people:
Are willing to accommodate my needs and still enjoy spending time with me.

25. My favorite motto, scripture, quote that gets me through tough times is:
I have a whole quote file full of them. Lately, because of what my Mom is suffering, I keep thinking about this one:
When we can't protect ourselves any more, only mercy remains. -- Steven Levine
The word "mercy" doesn't quite do it for me, though. I also think of this one:
There *is* no safety, except the ultimate safety: to let go of life and death and realize that there was never anything to let go of. -- Stephen Mitchell, Meetings with the Archangel
Also I find myself muttering "Other monks" a lot, because of this one:
I am suddenly reminded of a Kathleen Norris quote of a time she asked a monk what the greatest obstacle to spiritual community life was for him, and he answered immediately and, to my mental ear, rather wryly, "Other monks!" -- Elise Matthesen

26. When someone is diagnosed I’d like to tell them:
Whatever they most want and need to hear.

27. Something that has surprised me about living with an illness is:
I don't know. Life is full of surprises and also not much surprises me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I don't do superlatives. I like it when people I care about ask how I'm doing, do little things to cheer me up, help me deal with doctors, sympathize with my difficulties/pain, take me as I am.

29. I’m involved with Invisible Illness Week because:
Friends are, it seems worth talking about.

30. The fact that you read this list makes me feel:
I am pleased when people make an effort to learn about these issues in whatever way they choose. How I feel about any particular individual reading this particular list depends on my relationship with that person.


( 9 comments — Leave a comment )
Sep. 15th, 2009 08:03 pm (UTC)
I've heard invisible insane is "out of sight, out of mind"

I keep thinking about doing this, but I don't think I'm going to. Everyone who reads my LJ probably already knows about the depression, because I'm upfront about it.
Sep. 15th, 2009 08:23 pm (UTC)
Thanks for this. I appreciated your interactions with the questions, and especially enjoyed the quotes. Other monks!
Sep. 15th, 2009 10:44 pm (UTC)
Re: Other monks, in The Cloister Walk, Kathleen Norris quoted a monk as saying that the real problem with living in a monastery is that every man had a mother who cooked potatoes a different way. ;)
Sep. 16th, 2009 12:13 am (UTC)
It sounds like I should look up this book.
Sep. 15th, 2009 08:40 pm (UTC)
I love Emergency Vets!

And thank you for posting this -- it articluated some issues that I was having with this list/meme and couldn't really name.
Sep. 16th, 2009 12:34 am (UTC)
I'm glad my post was helpful!
Sep. 16th, 2009 01:49 am (UTC)
I agree with you about the underlying assumptions. Still, overall, not a bad list to get started with if you want to journal and/or work through feelings about a chronic illness on paper.
Sep. 17th, 2009 10:59 pm (UTC)
Do you mind if I link?
Sep. 17th, 2009 11:47 pm (UTC)
Go right ahead!
( 9 comments — Leave a comment )

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