Invisible Illness Week
...was apparently last week. And was sponsored by a Christian group. And concentrated more on things like chronic pain and diabetes than mental illness, though one page I saw acknowledged cancer, eating disorders and mental illness. (Of course, I don't mean to imply that those don't all deserve attention.) Anyway, I saw jcdaredevil fill out this meme about it yesterday, in the context of mental illness, and thought it was worth repeating.
01. The illness[es] I live with is[are]:
Dysthymic Disorder, General Anxiety Disorder and Obsessive-Compulsive Personality Disorder.
02. I was diagnosed with it in the year:
2005, I think, though it could've been toward the end of 2004. I started therapy in July 2004, but I waited some months before asking my psychiatrist for an actual diagnosis.
03. But I had symptoms since:
As early as I can remember in the case of the OCPD (I'd count the letters on the covers of my parents' magazines pretty much since I could read, formulating elaborate rules to ensure I only wound up with even numbers) and sometime in the early-to-mid 1990's in the case of the others.
04. The biggest adjustment I've had to make is:
Realizing that the presence of illness doesn't mean that I'm a fundamentally broken person. (I spent quite some time arguing with my therapist on the subject early on--"But my brain's broken!")
05. Most people assume:
These days, probably that I don't struggle with mental illness at all.
06. The hardest part about mornings are:
Not falling right back into bed. I've gotten better at avoiding that since leaving my alarm on the other side of the room.
07. My favorite medical TV show is:
House MD...even though I haven't gotten around to watching the last season yet.
08. A gadget I couldn't live without is:
My car...or does that not count as a "gadget"?
09. The hardest part about nights are:
Lying awake talking to imaginary people for hours. There's a small cast of imaginary avatars who either just listen to my ramblings or personify various insecurities.
10. Each day I take __ pills & vitamins:
None, currently. I was on Wellbutrin XL for two and a half years (after a brief time on Lexapro), which I weaned myself off of in December 2006.
11. Regarding alternative treatments I:
Didn't try much of anything beyond sitting around & waiting before I finally got professional help.
12. If I had to choose between an invisible illness or visible I would choose:
Not to engage in a dichotomy I'm not sure I want to encourage.
13. Regarding working and career:
One reason I finally got professional help was because my schoolwork really suffered during the semester that I hit rock bottom, when I started having panic attacks several times a week. That C+ burned badly.
Nowadays the OCPD can interfere with my ability to handle my coworkers doing things differently than I would (I'm sure many of you can understand the urge to stomp all over others and organize the whole damn world) and I can get anxious about being around people, but other than that it doesn't have any large-scale effects in the context of my job.
14. People would be surprised to know:
That OCPD isn't the same thing as OCD. It really isn't.
15. The hardest thing to accept about my new reality has been:
That I'm not sure someone who hasn't been on the inside of mental illness can really understand what it's like, resulting in a severe failure of empathy that I think greatly contributes to the stigmatization of it as somehow lesser than more outwardly obvious illnesses, of its sufferers as somehow weaker or more responsible for their conditions than others.
16. Something I never thought I could do with my illness that I did was:
Write my thesis, maintain a romantic relationship in what turned out to be a more mature way than I could've expected (it was more than three years ago, but those four months were pretty sweet).
17. The commercials about my illness:
Are often patronizing, which I absolutely acknowledge even though I've appropriated the Zoloft bouncy rock to head posts on the subject.
18. Something I really miss doing since I was diagnosed is:
Uhm, it didn't really work that way.
19. It was really hard to have to give up:
The emotional habits of depression; the perverse comfort of misery, the urge to pull it over me like a blanket and never come out from under it.
20. A new hobby I have taken up since my diagnosis is:
Uhm, it hasn't really worked this way either.
21. If I could have one day of feeling normal again I would:
"Again"? I'm not sure what would be different about me if you lifted out the anxiety & OCPD for a day; maybe I'd be less inhibited, maybe I'd be less obsessive.
22. My illness has taught me:
That you don't get to tell people their feelings aren't legitimate.
23. One thing people say that gets under my skin is:
"It's all just in your head." Well gosh, thanks.
24. But I love it when people:
Actually seem to get it.
25. My favorite motto, scripture, quote that gets me through tough times is:
I spent a rather long time last night looking through various places I've aggregated quotations over the years: the page on my ancient Geocities site (which, by now, bears many things I don't agree with any more); my LJ Memories; the textfile I used to update with quotations I meant to add to the website. The ones that echoed with me in the past and still do aren't particularly uplifting or inspiring, they're the ones that phrased elements of my experience with far more skill than I've ever possessed, lines like Baudelaire's "I have felt the wind of the wing of madness" and others found in various autobiographical depression-narratives I sought out for catharsis.
26. When someone is diagnosed I'd like to tell them:
Not to stress out too much about the labels. They simply serve to better identify what you have to deal with; they're not fundamental descriptions of you as a person.
27. Something that has surprised me about living with an illness is:
In my case, how much it's sunk into the background, seeming to become more my past than my present. I know I'm one of the lucky ones because my medication pretty much obliterated the depression, which was making everything else so much worse that it felt as if the veil between myself and the World of the Living had been lifted entirely, but even though the GAD and OCPD are still parts of my life they've been less and less essential elements of my thinking as time's gone by.
28. The nicest thing someone did for me when I wasn't feeling well was:
Hug me. I'm so often starved for physical contact that it really means a lot.
29. I'm involved with Invisible Illness Week because:
I can afford to be open about my history with mental illness, where others might face more stigmatization than I do. If I can show someone that yes, Virginia, sometimes people can come back from the dead emerge on the other side of depression, that's my good deed for the day.
30. The fact that you read this list makes me feel:
Justified in writing all of this.
I was thinking about these issues in particular over the weekend because, while catching up with unread blog posts from my vacation and since, I happened upon Oliver Sacks' TED talk and interview about his work on hallucination. This particular portion of the interview seemed notable to me:You have still brought to people these stories of people who are different from them, who either perceive differently or think differently. Your work seems to have helped people understand what it is like to be different. Is this something you intended to do? Was there an attempt to destigmatize your patients on your part?
This has not been an explicit thought or message and I don't feel I have "messages." But, I’m a describer and I want to share experiences, and I think, especially to see beyond a diagnosis to what the whole person is like.
[...]
But, "destigmatize" … I don’t know whether you saw it but I have a piece in the current New York Review of Books about mental illness, which is actually the first time I’ve ever written an essay on this. I never use the word "stigma," as I never use the word "power." I don’t tend to have this sort of political-sociological vocabulary, but I think very much in terms of needs and obligations. I don’t think I’m motivated too strongly by stigmas. I think my general feeling is sort of sympathetic and appreciative and respect for everyone. I hope that diffuses. But at the same time, that’s not the intent of my writing. It’s not intended to destigmatize. It’s intended to present people in their richness, as a whole, which may include a diagnosis or two. What I want to say, also, is that the "who" is greater than the "what."
Two things. First: he says toward the end of his lecture that there must be hundreds of thousands of people afraid of admitting slight hallucinations and that discussing the phenomena more will allow people to be more open about their experiences, which certainly sounds like an aim to destigmatize to me. Second: I hope the relative popularity of his work is a sign that that process of destigmatization is actually taking place, because the alternative is that more people would be reading his books (particularly The Man Who Mistook His Wife for a Hat) on the level of curiosities to gawk at rather than human beings to understand. Of course, it's understandable that Sacks might not want to take on the mantle of activism.
01. The illness[es] I live with is[are]:
Dysthymic Disorder, General Anxiety Disorder and Obsessive-Compulsive Personality Disorder.
02. I was diagnosed with it in the year:
2005, I think, though it could've been toward the end of 2004. I started therapy in July 2004, but I waited some months before asking my psychiatrist for an actual diagnosis.
03. But I had symptoms since:
As early as I can remember in the case of the OCPD (I'd count the letters on the covers of my parents' magazines pretty much since I could read, formulating elaborate rules to ensure I only wound up with even numbers) and sometime in the early-to-mid 1990's in the case of the others.
04. The biggest adjustment I've had to make is:
Realizing that the presence of illness doesn't mean that I'm a fundamentally broken person. (I spent quite some time arguing with my therapist on the subject early on--"But my brain's broken!")
05. Most people assume:
These days, probably that I don't struggle with mental illness at all.
06. The hardest part about mornings are:
Not falling right back into bed. I've gotten better at avoiding that since leaving my alarm on the other side of the room.
07. My favorite medical TV show is:
House MD...even though I haven't gotten around to watching the last season yet.
08. A gadget I couldn't live without is:
My car...or does that not count as a "gadget"?
09. The hardest part about nights are:
Lying awake talking to imaginary people for hours. There's a small cast of imaginary avatars who either just listen to my ramblings or personify various insecurities.
10. Each day I take __ pills & vitamins:
None, currently. I was on Wellbutrin XL for two and a half years (after a brief time on Lexapro), which I weaned myself off of in December 2006.
11. Regarding alternative treatments I:
Didn't try much of anything beyond sitting around & waiting before I finally got professional help.
12. If I had to choose between an invisible illness or visible I would choose:
Not to engage in a dichotomy I'm not sure I want to encourage.
13. Regarding working and career:
One reason I finally got professional help was because my schoolwork really suffered during the semester that I hit rock bottom, when I started having panic attacks several times a week. That C+ burned badly.
Nowadays the OCPD can interfere with my ability to handle my coworkers doing things differently than I would (I'm sure many of you can understand the urge to stomp all over others and organize the whole damn world) and I can get anxious about being around people, but other than that it doesn't have any large-scale effects in the context of my job.
14. People would be surprised to know:
That OCPD isn't the same thing as OCD. It really isn't.
15. The hardest thing to accept about my new reality has been:
That I'm not sure someone who hasn't been on the inside of mental illness can really understand what it's like, resulting in a severe failure of empathy that I think greatly contributes to the stigmatization of it as somehow lesser than more outwardly obvious illnesses, of its sufferers as somehow weaker or more responsible for their conditions than others.
16. Something I never thought I could do with my illness that I did was:
Write my thesis, maintain a romantic relationship in what turned out to be a more mature way than I could've expected (it was more than three years ago, but those four months were pretty sweet).
17. The commercials about my illness:
Are often patronizing, which I absolutely acknowledge even though I've appropriated the Zoloft bouncy rock to head posts on the subject.
18. Something I really miss doing since I was diagnosed is:
Uhm, it didn't really work that way.
19. It was really hard to have to give up:
The emotional habits of depression; the perverse comfort of misery, the urge to pull it over me like a blanket and never come out from under it.
20. A new hobby I have taken up since my diagnosis is:
Uhm, it hasn't really worked this way either.
21. If I could have one day of feeling normal again I would:
"Again"? I'm not sure what would be different about me if you lifted out the anxiety & OCPD for a day; maybe I'd be less inhibited, maybe I'd be less obsessive.
22. My illness has taught me:
That you don't get to tell people their feelings aren't legitimate.
23. One thing people say that gets under my skin is:
"It's all just in your head." Well gosh, thanks.
24. But I love it when people:
Actually seem to get it.
25. My favorite motto, scripture, quote that gets me through tough times is:
I spent a rather long time last night looking through various places I've aggregated quotations over the years: the page on my ancient Geocities site (which, by now, bears many things I don't agree with any more); my LJ Memories; the textfile I used to update with quotations I meant to add to the website. The ones that echoed with me in the past and still do aren't particularly uplifting or inspiring, they're the ones that phrased elements of my experience with far more skill than I've ever possessed, lines like Baudelaire's "I have felt the wind of the wing of madness" and others found in various autobiographical depression-narratives I sought out for catharsis.
26. When someone is diagnosed I'd like to tell them:
Not to stress out too much about the labels. They simply serve to better identify what you have to deal with; they're not fundamental descriptions of you as a person.
27. Something that has surprised me about living with an illness is:
In my case, how much it's sunk into the background, seeming to become more my past than my present. I know I'm one of the lucky ones because my medication pretty much obliterated the depression, which was making everything else so much worse that it felt as if the veil between myself and the World of the Living had been lifted entirely, but even though the GAD and OCPD are still parts of my life they've been less and less essential elements of my thinking as time's gone by.
28. The nicest thing someone did for me when I wasn't feeling well was:
Hug me. I'm so often starved for physical contact that it really means a lot.
29. I'm involved with Invisible Illness Week because:
I can afford to be open about my history with mental illness, where others might face more stigmatization than I do. If I can show someone that yes, Virginia, sometimes people can come back from the dead emerge on the other side of depression, that's my good deed for the day.
30. The fact that you read this list makes me feel:
Justified in writing all of this.
I was thinking about these issues in particular over the weekend because, while catching up with unread blog posts from my vacation and since, I happened upon Oliver Sacks' TED talk and interview about his work on hallucination. This particular portion of the interview seemed notable to me:You have still brought to people these stories of people who are different from them, who either perceive differently or think differently. Your work seems to have helped people understand what it is like to be different. Is this something you intended to do? Was there an attempt to destigmatize your patients on your part?
This has not been an explicit thought or message and I don't feel I have "messages." But, I’m a describer and I want to share experiences, and I think, especially to see beyond a diagnosis to what the whole person is like.
[...]
But, "destigmatize" … I don’t know whether you saw it but I have a piece in the current New York Review of Books about mental illness, which is actually the first time I’ve ever written an essay on this. I never use the word "stigma," as I never use the word "power." I don’t tend to have this sort of political-sociological vocabulary, but I think very much in terms of needs and obligations. I don’t think I’m motivated too strongly by stigmas. I think my general feeling is sort of sympathetic and appreciative and respect for everyone. I hope that diffuses. But at the same time, that’s not the intent of my writing. It’s not intended to destigmatize. It’s intended to present people in their richness, as a whole, which may include a diagnosis or two. What I want to say, also, is that the "who" is greater than the "what."
Two things. First: he says toward the end of his lecture that there must be hundreds of thousands of people afraid of admitting slight hallucinations and that discussing the phenomena more will allow people to be more open about their experiences, which certainly sounds like an aim to destigmatize to me. Second: I hope the relative popularity of his work is a sign that that process of destigmatization is actually taking place, because the alternative is that more people would be reading his books (particularly The Man Who Mistook His Wife for a Hat) on the level of curiosities to gawk at rather than human beings to understand. Of course, it's understandable that Sacks might not want to take on the mantle of activism.