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rm1. The illnesses I live with are:
Mitral Valve Prolapse Syndrome
Celiac Disease
2. I was diagnosed with it in the year:
MVPS: 1984
Celiac: 2006?
3. But I had symptoms since:
MVPS: since age 11
Celiac: since birth
4. The biggest adjustment I've had to make is:
MVPS: because I was still growing it didn't feel like an adjustment, it just was.
Celiac: I cannot eat any food that contains or has come into contact with gluten. This includes wheat, barley, rye, and oats (although oats is a matter of discussion amongst celiacs)
5. Most people assume:
That I'm on a low-carb diet. That I have an eating disorder. That I'm lazy. That I suffer from mental health issues as primary illnesses instead of periodic symptoms of both illnesses. That I'm just a fussy eater.
6. The hardest part about mornings is:
I don't like them, but unless I've been exposed to gluten they aren't probably any worse for me than any other person who hates mornings. When I've been exposed to gluten, it is not always possible for me to leave bed.
7. My favorite medical TV show is:
My childhood was extremely medicalized for reasons both related and not related to these issues. I have an accute medical phobia and don't really enjoy shows like this, although I will watch them sometimes for other plotlines but have to look away a lot.
8. A gadget I couldn't live without is:
Without the Internet I never would have gotten diagnosed with celiac disease and I probably would have had my gall-bladder out too. The Internet isn't just for porn.
9. The hardest part about nights is:
If I've been exposed to gluten and have been able to function I crash early. I also commonly experience night-sweats.
10. Each day I take [?] pills & vitamins.
Unlike many people with MVPS I am not on beta blockers. I do however have to take large doses of antibiotics any time I have dental work. Because celiac disease often comes with severe dental problems -- that's a lot of antibiotics, which over time have been sort of shit for my system. Meanwhile, there is no treatment for celiac disease other than to eat a gluten-free diet, but I always carry pepto in case I am exposed to gluten, and daily need to take substantial B-vitamins, D and calcium.
11. Regarding alternative treatments, I:
I use them a lot to deal with symptoms when I've been exposed to gluten and to deal with the permanent damage my body has suffered because of how long it took me to get diagnosed.
12. If I had to choose between an invisible illness and a visible one, I would choose:
I'm very lucky that the diseases I have probably won't kill me, and probably won't do more damage to my body now that I know what they are. It's a pretty good deal in the scheme of things.
13. Regarding working and career:
In any business situation with food, I have to choose either to explain my illness or have assumptions made about my weight and body image that can be damaging to my authority.
It is also very hard work in film with celiac disease -- I have to bring my own makeup to set, pack my own lunch for which there are never refrigeration facilities and work long days with unpredictable access to food that won't make me ill.
14. People would be surprised to know:
That there are times when I am seriously utterly grief-stricken about these diseases that I freely admit aren't a big deal in the scheme of things. Without them, I probably would have been a professional dancer with a company. Without them, I would have a nice smile. Without them, I wouldn't have spent my whole life having people insist I was bulimic because of my teeth or the bags under my eyes. Without them, I'd be taller. Without them, my feelings about my gender would not be complicated by how my body has let me down. Without them, I would not constantly have to deal with accidental symbolic slights (I cannot break bread with you) or intentional ones (in Catholicism, I cannot take communion and so my soul is suspect; sometimes when I ask about food ingredients, impatient workers will tell me "you just better not eat then" -- you can't imagine what that feels like). Without them I'd be able to just stick my fork into whatever Patty is having for dinner; we wouldn't need separate pots and I wouldn't have to watch what she eats before kissing her. Without them, I'd also spend about 35% of what I do now on groceries; celiac disease is expensive.
15. The hardest thing to accept about my new reality is:
So many of the symptoms I live with could have been prevented by early diagnosis if I lived abroad. That's hard. There's also a lot of food I feel deeply sentimental about I can't have -- Anzac biscuits, semolina bread, etc. That's hard too.
16. Something I never thought I could do with my illness was:
I was only able to consider myself an athlete after my celiac diagnosis.
17. The commercials about my illness
There aren't any.
18. Something I really miss doing since I was diagnosed:
Eating cookie dough. Not having to plan my food and my food risks ahead.
19. It was really hard to give up:
A sense of being invincible.
20. A new hobby I've taken up since my diagnosis is:
Like I said, I only started fencing after diagnosis.
21. If I could have one day of feeling normal again, I would:
I have always been sick. I don't know what normal is.
22. My illness has taught me:
That my otherness is not my imagination, nor my fault.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That you can't eat out in restaurants without a gluten-free menu. You totally can, you just have to assert yourself. And I have no patience for people who put their perception of what is "nice" over protecting their own health. Also doctors who describe celiac as "a rare childhood illness" -- that's not true on several levels -- it's pretty common and it's life-long, but the U.S. is weird about this one.
24. But I love it when people:
View celiac disease as a cooking challenge. Are aware of when I'm walking slower (either because of celiac or MVPS issues) and slow down automatically without comment -- I hate having to ask people to slow down. Don't apologize for eating gluten in front of me -- it's fine -- why would I begrudge you good food as long as I have some good food too?
25. My favorite motto, scripture, quote that gets me through tough times is:
Mostly I don't. Mostly I think of fictional stories and people and find solace in that.
26. When someone is diagnosed I like to tell them:
Which gluten-free products are awesome and to fucking get control of themselves and start viewing this as a way to be more intentional, because you don't have a choice anymore. Most people get diagnosed with MVPS as adolescents, so I don't usually meet people just diagnosed with that.
27. Something that has surprised me about living with an illness is:
That I have an illness. I down-play it a lot, but I have to think about it Every Single Day and some days it's the only thing going on in my day.
28. The nicest thing someone did for me when I wasn't feeling well was:
My diagnoses both were during pretty fucked up things in my life. My friends are patient with me. It's not epic.
29. I'm involved with Invisible Illness Week because:
1 in 133 people have celiac disease. Most have not been diagnosed. Celiac disease undiagnosed can b hell to live with it. It can also lead to significantly higher risks of epilepsy, depression, anxiety disorders, neuralgia and intestinal cancer. Diagnosis can save your life. Diagnosis can also cure other diseases or symptoms you've been living with for years.
MVPS is a big pain in the ass and also has neurological symptoms including anxiety and depression. But it's not nearly as scary as doctors make it out to be.
30. The fact that you read this list makes me feel:
A little weird. Also a lot of these questions don't really get at the symptom sets that come with these diseases, so if you have any questions, I guess this is the place to ask.
Mitral Valve Prolapse Syndrome
Celiac Disease
2. I was diagnosed with it in the year:
MVPS: 1984
Celiac: 2006?
3. But I had symptoms since:
MVPS: since age 11
Celiac: since birth
4. The biggest adjustment I've had to make is:
MVPS: because I was still growing it didn't feel like an adjustment, it just was.
Celiac: I cannot eat any food that contains or has come into contact with gluten. This includes wheat, barley, rye, and oats (although oats is a matter of discussion amongst celiacs)
5. Most people assume:
That I'm on a low-carb diet. That I have an eating disorder. That I'm lazy. That I suffer from mental health issues as primary illnesses instead of periodic symptoms of both illnesses. That I'm just a fussy eater.
6. The hardest part about mornings is:
I don't like them, but unless I've been exposed to gluten they aren't probably any worse for me than any other person who hates mornings. When I've been exposed to gluten, it is not always possible for me to leave bed.
7. My favorite medical TV show is:
My childhood was extremely medicalized for reasons both related and not related to these issues. I have an accute medical phobia and don't really enjoy shows like this, although I will watch them sometimes for other plotlines but have to look away a lot.
8. A gadget I couldn't live without is:
Without the Internet I never would have gotten diagnosed with celiac disease and I probably would have had my gall-bladder out too. The Internet isn't just for porn.
9. The hardest part about nights is:
If I've been exposed to gluten and have been able to function I crash early. I also commonly experience night-sweats.
10. Each day I take [?] pills & vitamins.
Unlike many people with MVPS I am not on beta blockers. I do however have to take large doses of antibiotics any time I have dental work. Because celiac disease often comes with severe dental problems -- that's a lot of antibiotics, which over time have been sort of shit for my system. Meanwhile, there is no treatment for celiac disease other than to eat a gluten-free diet, but I always carry pepto in case I am exposed to gluten, and daily need to take substantial B-vitamins, D and calcium.
11. Regarding alternative treatments, I:
I use them a lot to deal with symptoms when I've been exposed to gluten and to deal with the permanent damage my body has suffered because of how long it took me to get diagnosed.
12. If I had to choose between an invisible illness and a visible one, I would choose:
I'm very lucky that the diseases I have probably won't kill me, and probably won't do more damage to my body now that I know what they are. It's a pretty good deal in the scheme of things.
13. Regarding working and career:
In any business situation with food, I have to choose either to explain my illness or have assumptions made about my weight and body image that can be damaging to my authority.
It is also very hard work in film with celiac disease -- I have to bring my own makeup to set, pack my own lunch for which there are never refrigeration facilities and work long days with unpredictable access to food that won't make me ill.
14. People would be surprised to know:
That there are times when I am seriously utterly grief-stricken about these diseases that I freely admit aren't a big deal in the scheme of things. Without them, I probably would have been a professional dancer with a company. Without them, I would have a nice smile. Without them, I wouldn't have spent my whole life having people insist I was bulimic because of my teeth or the bags under my eyes. Without them, I'd be taller. Without them, my feelings about my gender would not be complicated by how my body has let me down. Without them, I would not constantly have to deal with accidental symbolic slights (I cannot break bread with you) or intentional ones (in Catholicism, I cannot take communion and so my soul is suspect; sometimes when I ask about food ingredients, impatient workers will tell me "you just better not eat then" -- you can't imagine what that feels like). Without them I'd be able to just stick my fork into whatever Patty is having for dinner; we wouldn't need separate pots and I wouldn't have to watch what she eats before kissing her. Without them, I'd also spend about 35% of what I do now on groceries; celiac disease is expensive.
15. The hardest thing to accept about my new reality is:
So many of the symptoms I live with could have been prevented by early diagnosis if I lived abroad. That's hard. There's also a lot of food I feel deeply sentimental about I can't have -- Anzac biscuits, semolina bread, etc. That's hard too.
16. Something I never thought I could do with my illness was:
I was only able to consider myself an athlete after my celiac diagnosis.
17. The commercials about my illness
There aren't any.
18. Something I really miss doing since I was diagnosed:
Eating cookie dough. Not having to plan my food and my food risks ahead.
19. It was really hard to give up:
A sense of being invincible.
20. A new hobby I've taken up since my diagnosis is:
Like I said, I only started fencing after diagnosis.
21. If I could have one day of feeling normal again, I would:
I have always been sick. I don't know what normal is.
22. My illness has taught me:
That my otherness is not my imagination, nor my fault.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That you can't eat out in restaurants without a gluten-free menu. You totally can, you just have to assert yourself. And I have no patience for people who put their perception of what is "nice" over protecting their own health. Also doctors who describe celiac as "a rare childhood illness" -- that's not true on several levels -- it's pretty common and it's life-long, but the U.S. is weird about this one.
24. But I love it when people:
View celiac disease as a cooking challenge. Are aware of when I'm walking slower (either because of celiac or MVPS issues) and slow down automatically without comment -- I hate having to ask people to slow down. Don't apologize for eating gluten in front of me -- it's fine -- why would I begrudge you good food as long as I have some good food too?
25. My favorite motto, scripture, quote that gets me through tough times is:
Mostly I don't. Mostly I think of fictional stories and people and find solace in that.
26. When someone is diagnosed I like to tell them:
Which gluten-free products are awesome and to fucking get control of themselves and start viewing this as a way to be more intentional, because you don't have a choice anymore. Most people get diagnosed with MVPS as adolescents, so I don't usually meet people just diagnosed with that.
27. Something that has surprised me about living with an illness is:
That I have an illness. I down-play it a lot, but I have to think about it Every Single Day and some days it's the only thing going on in my day.
28. The nicest thing someone did for me when I wasn't feeling well was:
My diagnoses both were during pretty fucked up things in my life. My friends are patient with me. It's not epic.
29. I'm involved with Invisible Illness Week because:
1 in 133 people have celiac disease. Most have not been diagnosed. Celiac disease undiagnosed can b hell to live with it. It can also lead to significantly higher risks of epilepsy, depression, anxiety disorders, neuralgia and intestinal cancer. Diagnosis can save your life. Diagnosis can also cure other diseases or symptoms you've been living with for years.
MVPS is a big pain in the ass and also has neurological symptoms including anxiety and depression. But it's not nearly as scary as doctors make it out to be.
30. The fact that you read this list makes me feel:
A little weird. Also a lot of these questions don't really get at the symptom sets that come with these diseases, so if you have any questions, I guess this is the place to ask.
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no subject
Date: 2009-09-15 06:06 pm (UTC)no subject
Date: 2009-09-16 02:03 am (UTC)no subject
Date: 2009-09-16 04:38 am (UTC)My best friend has multiple food allergies and I'm always trying to make sure she's not accidentally poisoned. Once at a banquet we asked for a piece of the dessert cake on a clean plate for her because the raspberry sauce would send her to the hospital. She ate a bite of the new cake before realizing that the server had simply wiped off the visible sauce -- the cake was still contaminated. She didn't need to use her epi-pen, but she did have to take benadryl.
One of the most responsive places we've been to was the Norwegian restaurant at Epcot. The chef came out of the kitchen and explained the ingredients of everything.
no subject
Date: 2009-09-16 12:10 pm (UTC)Also, a question: how close is contact with gluten? You mentioned that you have to eat your lunch refrigerated---is that because close contact extends through packaging?
no subject
Date: 2009-09-16 02:29 pm (UTC)no subject
Date: 2009-09-16 03:13 pm (UTC)Plus, I'd really rather not poison you by accident.
no subject
Date: 2009-09-16 05:30 pm (UTC)This guy in the fifties appeared to have the same kind of problem, but because it wasn't diagnosed as an actual disorder, he was punished for it relentlessly. His file was filled with an equal number of poor grades (from teachers who considered his problems with spelling and writing a sign of laziness or rebellion) and lengthy notes acknowledging that he was working extremely hard and getting intensive tutoring. The school headmaster seemed to dimly perceive that there was something else going on, but it was clear the guy was stigmatized through his entire school career. Even today -- he eventually got an MBA and became very successful in real estate -- his correspondence and emails are erratically spelled and punctuated, and I'm quite confident that it's not that he's dumb.
It was a case in point of how being punished for being sick or having a physical or neurological disability is a special kind of hell. Which is not something that's obvious if you don't know what's going on or what it is.