Invisible Chronic Illness Awareness
Sep. 14th, 2009 10:03 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
talkstowolvesThis week is National Invisible Chronic Illness Awareness week. Over at the Invisible Illness Week website, this means that they're having a virtual seminar featuring conference talks through Blog Talk Radio. It looks like the speakers will be discoursing on topics as varied as finding health insurance with a pre-existing condition, coping with chronic illness in the context of marriage, and building healthy boundaries.
There's also been a meme making the rounds called 30 Things About My Invisible Illness You May Not Know. You've probably seen it on your friends page several times already; I know I have. I hope that fact by itself has opened eyes to the fact that invisible illnesses are more prevalent than greater society seems to want to recognize.
I've decided to take part in the meme, just as I've previously decided to blog about my TMJD, because I believe it's important for invisible illness to be more visible. The only way to encourage compassion and prompt our society to change its attitude toward illness and the individual is to talk about the issues at hand and "normalize" them. I do not see my conditions as the largest defining features of my life, nor do I victimize myself due to them; however, they are an inextricable part of my existence and experience as a human being.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: temporomandibular joint dysfunction (TMJD), poly-cystic ovarian syndrome (PCOS), chronic bronchitis, migraines, and irritable bowel syndrome.
I have also developed a consciousness issue since 2006 that means I cannot drive for long periods of time alone on the interstate: I literally lose consciousness, with nary caffeine, loud music, cold air (or even conversation sometimes), making any difference.
Also, I have majorly damaged ankles and arthritis in both, so that it's inadvisable for me to wear aught else than supportive athletic shoes. It's also inadvisable for me to do a lot of running and jumping.
2. I was diagnosed with it in the year: The TMJD was formally diagnosed in 2006.
PCOS in 2000.
I am unsure when the formal diagnosis for chronic bronchitis happened, but it was when I was in my teens.
The migraines and IBS have not been formally medically diagnosed.
The ankles are a result of multiple breakages and sprains between the ages of 11 and 18, including the breakage (twice) of the bony growth plate in my left foot.
3. But I had symptoms since: I've had symptoms relating to TMJD since I was a child.
I've had PCOS symptoms since I hit puberty.
I've had symptoms relating to chronic bronchitis since I was a teenager.
I've had migraines since I was 12.
The IBS is trickier: I've had symptoms similar to IBS during every menstrual cycle since puberty, but the symptoms have also recurred with greater frequency during periods of great stress and since the removal of my gall bladder. (I should note that I also had painful attacks induced from gallstones periodically from the age of 12 to the age of 19, when I had my gall bladder surgically removed.)
4. The biggest adjustment I’ve had to make is: Regarding TMJD, the biggest adjustment has been attempting to train myself to sleep on my back.
I can't even objectively think of adjustments I've had to make relating to the PCOS, migraines, chronic bronchitis, or IBS. I've just always had to deal with them. I have to avoid certain scents as migraine triggers and eating in certain ways and certain foods as IBS triggers (which don't always work).
Because of my ankles, I had to give up some forms of dancing. I was a ballerina as a child and it was a great blow to realize I wouldn't be able to do it with the same skill once I broke/sprained my ankles the first several times.
5. Most people assume: I don't know if it's true, but I feel that most people assume I'm lazy and possibly socially avoidant because of missed engagements.
6. The hardest part about mornings are: In terms of the TMJD, it's getting past the nausea induced by frighteningly tight neck and shoulder muscles; sometimes, the hardest thing is recovering a sense of balance.
If I have a migraine coming on upon waking, it's really hard to be conscious.
In terms of my ankles, it's hard sometimes to walk in the morning. My ankles don't want to bend and I have to slowly work flexibility back into them.
7. My favorite medical TV show is: I don't watch any medical television shows, although the snarkiness of House tends to arrest me when it happens to be on.
8. A gadget I couldn’t live without is: A gadget? Probably my heating pad. I'm not entirely sure I could count the number of times it's come in handy.
9. The hardest part about nights are: On the TMJD front, that would be remembering to and consciously relaxing my jaw every time I wake up even slightly. There isn't much consistently difficult about nights in terms of the rest unless I'm specifically suffering from a flare-up or migraine or cold/wet weather.
10. Each day I take __ pills & vitamins. (No comments, please.) I generally take more Advil than I should. When things get bad and I have the time to sleep in, I take a flexeril. When things get really bad and I have no choice, I take a flexeril and a vicodin. I also try to remember to take a daily vitamin.
11. Regarding alternative treatments I: I go in big for massage, although I can't afford it professionally. So I just beg every friend who's got a good touch to work on my neck and shoulders.
I also work with cold packs and certain patterns of pressure on my face when I have a migraine.
12. If I had to choose between an invisible illness or visible I would choose: I'd like to echo someone else's answer here: I'd choose no illness! Illness sucks. However, I suppose it's better the devil you know than the one you don't.
13. Regarding working and career: I have lost more than one job by my, not frequent, but
periodically common inability to work. I definitely need to find some sort of employment that has an understanding boss, the ability to work from home occasionally, and reasonable health insurance coverage.
Stress is a factor that exacerbates a great many of my conditions, so I need a career in which I can minimize the stress. Still, I'm hoping I can have a career in academia. And, of course, there's writing. Creating.
14. People would be surprised to know: The sheer depth of shame and humiliation I feel when I can't go to work or when I let friends down socially because I am too dizzy, or in too much pain, or too tied to the lavatory to leave the house.
15. The hardest thing to accept about my new reality has been: The precarious social position it puts me in professionally.
16. Something I never thought I could do with my illness that I did was: In retrospect, I'm amazed I managed to be successful in Japan due to the ankle and IBS issues. However, I didn't let these issues affect my decision to move there or my expectation that I could be successful there. I did have a lot of problems at first, but I persevered.
17. The commercials about my illness: I'm really only aware of commercials for migraine
medications, which generally just annoy me. I've tried a good many OTC migraine medications and several of the prescription medications: either they don't work or the cure is almost as bad as the migraine.
18. Something I really miss doing since I was diagnosed is: I miss dancing and jumping without worry. I miss not being afraid of floral scents. I miss being able to eat a tasty salad without fear. I miss not needing prescription medication.
19. It was really hard to have to give up: Sleeping primarily on my side, regarding the TMJD. I've been primarily a side sleeper all my life, but sleeping on my side really exacerbates the pain.
Also, as I've mentioned above, it was a real blow to give up ballet.
20. A new hobby I have taken up since my diagnosis is: Er, I've been dealing with something since I was a child so I can't answer this question.
21. If I could have one day of feeling normal again I would: By normal, I presume this question means "if you could have one day of not living with your current or other conditions." In that case, I would jump rope, go to a heavy metal concert and jump my heart out, go to a BPAL party without bothering to check the notes, and eat as many salads and other foods I avoid as I liked.
22. My illness has taught me: How to say no and how to start taking better care of my body.
23. Want to know a secret? One thing people say that gets under my skin is: "You have a lot of/too many problems." Optionally with "...for someone your age." Even when it's not intended to be judgemental, that's how it feels. It feels like the speaker thinks I am at fault somehow for having these conditions in the first place or for not easily shaking them off or curing them. Especially when the second part is included.
24. But I love it when people: Recognize that caring for my health is the paramount concern.
25. My favorite motto, scripture, quote that gets me through tough times is: "She fought life with dreams." - Ngugi wa Thiong'O from her short story "Minutes of Glory."
26. When someone is diagnosed I’d like to tell them: There is no pat phrase or tidy little aphorism to offer an individual diagnosed with anything.
27. Something that has surprised me about living with an illness is: How ashamed my society makes me feel for not being "normal."
28. The nicest thing someone did for me when I wasn’t feeling well was: Lending the weight of their regard to my decision not to make an engagement due to my condition. It's really hard for me to break an engagement, but the second voice of support and acknowledgment of the rightness of my choice helps.
29. I’m involved with Invisible Illness Week because: I hope that the increase in awareness regarding invisible illnesses will induce society to be less judgemental and more supportive of those of us (and there are so many of us) who suffer from various invisible ailments.
30. The fact that you read this list makes me feel: If you actually made it to the end of this list, I thank you for being so interested in both myself and the experiences of those who live with invisible illness. I am grateful for your caring attention. Now spread the word!
There's also been a meme making the rounds called 30 Things About My Invisible Illness You May Not Know. You've probably seen it on your friends page several times already; I know I have. I hope that fact by itself has opened eyes to the fact that invisible illnesses are more prevalent than greater society seems to want to recognize.
I've decided to take part in the meme, just as I've previously decided to blog about my TMJD, because I believe it's important for invisible illness to be more visible. The only way to encourage compassion and prompt our society to change its attitude toward illness and the individual is to talk about the issues at hand and "normalize" them. I do not see my conditions as the largest defining features of my life, nor do I victimize myself due to them; however, they are an inextricable part of my existence and experience as a human being.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: temporomandibular joint dysfunction (TMJD), poly-cystic ovarian syndrome (PCOS), chronic bronchitis, migraines, and irritable bowel syndrome.
I have also developed a consciousness issue since 2006 that means I cannot drive for long periods of time alone on the interstate: I literally lose consciousness, with nary caffeine, loud music, cold air (or even conversation sometimes), making any difference.
Also, I have majorly damaged ankles and arthritis in both, so that it's inadvisable for me to wear aught else than supportive athletic shoes. It's also inadvisable for me to do a lot of running and jumping.
2. I was diagnosed with it in the year: The TMJD was formally diagnosed in 2006.
PCOS in 2000.
I am unsure when the formal diagnosis for chronic bronchitis happened, but it was when I was in my teens.
The migraines and IBS have not been formally medically diagnosed.
The ankles are a result of multiple breakages and sprains between the ages of 11 and 18, including the breakage (twice) of the bony growth plate in my left foot.
3. But I had symptoms since: I've had symptoms relating to TMJD since I was a child.
I've had PCOS symptoms since I hit puberty.
I've had symptoms relating to chronic bronchitis since I was a teenager.
I've had migraines since I was 12.
The IBS is trickier: I've had symptoms similar to IBS during every menstrual cycle since puberty, but the symptoms have also recurred with greater frequency during periods of great stress and since the removal of my gall bladder. (I should note that I also had painful attacks induced from gallstones periodically from the age of 12 to the age of 19, when I had my gall bladder surgically removed.)
4. The biggest adjustment I’ve had to make is: Regarding TMJD, the biggest adjustment has been attempting to train myself to sleep on my back.
I can't even objectively think of adjustments I've had to make relating to the PCOS, migraines, chronic bronchitis, or IBS. I've just always had to deal with them. I have to avoid certain scents as migraine triggers and eating in certain ways and certain foods as IBS triggers (which don't always work).
Because of my ankles, I had to give up some forms of dancing. I was a ballerina as a child and it was a great blow to realize I wouldn't be able to do it with the same skill once I broke/sprained my ankles the first several times.
5. Most people assume: I don't know if it's true, but I feel that most people assume I'm lazy and possibly socially avoidant because of missed engagements.
6. The hardest part about mornings are: In terms of the TMJD, it's getting past the nausea induced by frighteningly tight neck and shoulder muscles; sometimes, the hardest thing is recovering a sense of balance.
If I have a migraine coming on upon waking, it's really hard to be conscious.
In terms of my ankles, it's hard sometimes to walk in the morning. My ankles don't want to bend and I have to slowly work flexibility back into them.
7. My favorite medical TV show is: I don't watch any medical television shows, although the snarkiness of House tends to arrest me when it happens to be on.
8. A gadget I couldn’t live without is: A gadget? Probably my heating pad. I'm not entirely sure I could count the number of times it's come in handy.
9. The hardest part about nights are: On the TMJD front, that would be remembering to and consciously relaxing my jaw every time I wake up even slightly. There isn't much consistently difficult about nights in terms of the rest unless I'm specifically suffering from a flare-up or migraine or cold/wet weather.
10. Each day I take __ pills & vitamins. (No comments, please.) I generally take more Advil than I should. When things get bad and I have the time to sleep in, I take a flexeril. When things get really bad and I have no choice, I take a flexeril and a vicodin. I also try to remember to take a daily vitamin.
11. Regarding alternative treatments I: I go in big for massage, although I can't afford it professionally. So I just beg every friend who's got a good touch to work on my neck and shoulders.
I also work with cold packs and certain patterns of pressure on my face when I have a migraine.
12. If I had to choose between an invisible illness or visible I would choose: I'd like to echo someone else's answer here: I'd choose no illness! Illness sucks. However, I suppose it's better the devil you know than the one you don't.
13. Regarding working and career: I have lost more than one job by my, not frequent, but
periodically common inability to work. I definitely need to find some sort of employment that has an understanding boss, the ability to work from home occasionally, and reasonable health insurance coverage.
Stress is a factor that exacerbates a great many of my conditions, so I need a career in which I can minimize the stress. Still, I'm hoping I can have a career in academia. And, of course, there's writing. Creating.
14. People would be surprised to know: The sheer depth of shame and humiliation I feel when I can't go to work or when I let friends down socially because I am too dizzy, or in too much pain, or too tied to the lavatory to leave the house.
15. The hardest thing to accept about my new reality has been: The precarious social position it puts me in professionally.
16. Something I never thought I could do with my illness that I did was: In retrospect, I'm amazed I managed to be successful in Japan due to the ankle and IBS issues. However, I didn't let these issues affect my decision to move there or my expectation that I could be successful there. I did have a lot of problems at first, but I persevered.
17. The commercials about my illness: I'm really only aware of commercials for migraine
medications, which generally just annoy me. I've tried a good many OTC migraine medications and several of the prescription medications: either they don't work or the cure is almost as bad as the migraine.
18. Something I really miss doing since I was diagnosed is: I miss dancing and jumping without worry. I miss not being afraid of floral scents. I miss being able to eat a tasty salad without fear. I miss not needing prescription medication.
19. It was really hard to have to give up: Sleeping primarily on my side, regarding the TMJD. I've been primarily a side sleeper all my life, but sleeping on my side really exacerbates the pain.
Also, as I've mentioned above, it was a real blow to give up ballet.
20. A new hobby I have taken up since my diagnosis is: Er, I've been dealing with something since I was a child so I can't answer this question.
21. If I could have one day of feeling normal again I would: By normal, I presume this question means "if you could have one day of not living with your current or other conditions." In that case, I would jump rope, go to a heavy metal concert and jump my heart out, go to a BPAL party without bothering to check the notes, and eat as many salads and other foods I avoid as I liked.
22. My illness has taught me: How to say no and how to start taking better care of my body.
23. Want to know a secret? One thing people say that gets under my skin is: "You have a lot of/too many problems." Optionally with "...for someone your age." Even when it's not intended to be judgemental, that's how it feels. It feels like the speaker thinks I am at fault somehow for having these conditions in the first place or for not easily shaking them off or curing them. Especially when the second part is included.
24. But I love it when people: Recognize that caring for my health is the paramount concern.
25. My favorite motto, scripture, quote that gets me through tough times is: "She fought life with dreams." - Ngugi wa Thiong'O from her short story "Minutes of Glory."
26. When someone is diagnosed I’d like to tell them: There is no pat phrase or tidy little aphorism to offer an individual diagnosed with anything.
27. Something that has surprised me about living with an illness is: How ashamed my society makes me feel for not being "normal."
28. The nicest thing someone did for me when I wasn’t feeling well was: Lending the weight of their regard to my decision not to make an engagement due to my condition. It's really hard for me to break an engagement, but the second voice of support and acknowledgment of the rightness of my choice helps.
29. I’m involved with Invisible Illness Week because: I hope that the increase in awareness regarding invisible illnesses will induce society to be less judgemental and more supportive of those of us (and there are so many of us) who suffer from various invisible ailments.
30. The fact that you read this list makes me feel: If you actually made it to the end of this list, I thank you for being so interested in both myself and the experiences of those who live with invisible illness. I am grateful for your caring attention. Now spread the word!