Invisible Illness Week
From rm and mellacita.
1. The illness I live with is:
Attention Deficit/Hyperactivity Disorder
2. I was diagnosed with it in the year:
February 2009
3. But I had symptoms since:
As long as I can remember.
4. The biggest adjustment I've had to make is:
Accepting that I couldn't fix myself. All the lifestyle changes I was trying to do before, but until I got medication it never worked.
5. Most people assume:
I honestly don't really know. I know some people have assumed I had AD/HD, but probably more than said it. I think people wouldn't pick up on anything right now, except maybe think I talk a lot and fast, but before the meds, gee. A lot of things. That I'm not actually interested in our conversation because I keep getting distracted or interrupting. That I don't want to beta your fic because I haven't been able to read it all yet. That I'm lazy or a procrastinator and have terrible study habits. That I have a shitty memory. That I don't want to be an equal partner because I don't do my chores. (That one sucked.) That I'm addicted to my computer. (I wasn't: it was a coping mechanism.) So many things!
6. The hardest part about mornings is:
Getting out of bed. One of the less-obvious side-effects of my AD/HD is that I have low energy levels due to the lack of dopamine in my brain, and getting out of bed in the morning can be so, so difficult. Once I metabolize the Concerta, the sleepiness that used to follow me through the day is gone.
7. My favorite medical TV show is:
Eh. Used to watch ER a bit, seen some Grey's anatomy. Not really my thing, but not because of the AD/HD, since that was before the diagnosis.
8. A gadget I couldn't live without is:
My cellphone. I use it to set alarms all the time so that when I get distracted and forget I have to leave or do something, it reminds me. Various things perform this function for me - email, planners, alarm clocks, but the cellphone is the most portable and gadgety.
9. The hardest part about nights is:
Going to sleep before the Concerta or Ritalin wears off. Not happening - it's a stimulant for sure!
10. Each day I take [?] pills & vitamins.
30mg slow release dose of Concerta. If I have to do something in the evenings that requires above-average focus, I supplement it with a 10mg short-acting pill of Ritalin, since I find the Concerta wears off after about 12 hours.
11. Regarding alternative treatments, I:
Haven't tried too much that's really medical, just focused on the lifestyle adjustments that AD/HD requires: a LOT of organization, redundant systems of reminders and notes and back-up plans, tricks to bleed out excessive energy so it doesn't distract or bother.
I'm not in therapy, since I'm feeling sufficiently able to function on my own right now and not emotionally off-balance, and I don't actually know what non-medical options there are right now! I'm fit, I eat well, I get good sleep, I have good relationships with family and friends, and I'm not stressed out, so I don't think a lifestyle change would do anything.
12. If I had to choose between an invisible illness and a visible one, I would choose:
An invisible one. I get to control who knows this about me, and while I'm probably more happy to share than the average person, I'm glad I get that choice.
13. Regarding working and career:
I fucked up my GPA over it, though fortunately managed to keep my physics courses at par. Failing two midterms in one day was the final straw in terms of going to the doctor for help, and I dropped two courses and asked for help in another in order to make it through that semester. If I'd gotten diagnosed earlier, I probably would have had a lot better - academically and emotionally - first three years of university. I didn't, though, and this is the first semester where I get the chance to finally see if I can live up to the potential I know I have inside of me. Results pending.
Long-term, though, the undiagnosed AD/HD severely affected my career dreaming and planning. The worse it got, the more I thought I'd never be able to get a PhD or be an academic, because there was no way I'd be able to focus in such a self-directed environment. And that spiraled into not thinking I was going to be able to succeed at anything, because I was completely unable to complete tasks or plan things or learn new material in such an overwhelming way. The best thing about getting diagnosed is that I feel like I have a future in what I'm interested again.
14. People would be surprised to know:
That I've had it all my life. You don't "get" AD/HD - the diagnostic criteria for adults require it to be present throughout childhood. I was top of my class all the way to the end of high school, and I didn't fit the stereotype of aggressive, frustrated, and failing boy. But that's just how one subset of AD/HD sufferers present - I, and many other girls in particular, presented differently, and because I was a quick learner and eager to please, I managed to succeed when the material was easy enough (as it was all the way through high school).
It was only when the material - and life - got complicated enough that I was no longer able to compensate. That's what made it unbearable for me, and obvious for others. But I still had it when I was young - sometimes I wonder if I might have stuck with more extracurriculars I got bored with and gave up on despite enjoying if I'd been diagnosed younger.
15. The hardest thing to accept about my new reality is:
That this thing is real, and not something I've made up to excuse my laziness/poor habits/bad memory/procrastination. That getting a medical boost is okay. That I actually do have AD/HD, even when I've been taking the medication long enough I've forgotten what it feels like to be off it.
16. Something I never thought I could do with my illness was:
See above about being an academic. I never thought I'd be able to do anything that required self-direction, because I couldn't make myself do it, no matter how hard I tried.
17. The commercials about my illness
Hm. I don't watch much TV with ads anymore, so I don't think I've seen any since I got diagnosed, and don't recall any from before.
18. Something I really miss doing since I was diagnosed:
Napping. I can't do it when I've been taking stimulants all day, even if I'm actually underslept. Only not really, because the napping got to be a super-excessive escape from reality in the worst of ways.
19. It was really hard to give up:
Fortunately, I haven't had to give up anything.
20. A new hobby I've taken up since my diagnosis is:
Reading! Okay, that's an old-new hobby, but I lost my ability to read more years ago than I care to admit. I used to be able to hyper-focus on books as a child, but that went away, and it had been ages since I'd been able to read more than a couple chapters of any book. I missed it so, so much.
21. If I could have one day of feeling normal again, I would:
I do now, I think. I used to think the way my brain functioned was normal - it raced, it flickered, it was like constant channel-changing with multiple channels playing at once, overloading and overwhelming and sometimes making me feel physically nauseous. On the meds, that's gone. I'm lucky that though AD/HD is chronic, mine is responsive to long-used and low-side-effect drugs.
22. My illness has taught me:
That it's okay to admit you can't do it alone.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
"America is AD/HD". (Really?) "AD/HD is over-diagnosed." (Not in girls it isn't.) Both of these are just ways of saying "your disability isn't real because some of the criteria are things everybody has". That's true of every mental disability.
24. But I love it when people:
Get that even though it's not the worst or most serious or untreatable of disabilities, it fucked my life up royally and was completely emotionally, mentally, and physically overwhelming.
25. My favorite motto, scripture, quote that gets me through tough times is:
"I don't always feel lucky, but I'm smart enough to try." (Ani Difrano) Because that really describes my worldview: I've got it damned good, even when I don't, and living like I do is half the battle.
26. When someone is diagnosed I like to tell them:
YOU AREN'T LAZY, AND YOU AREN'T ALONE. And there are tried-and-true drugs that help the root of the problem that may very well help you: find a doctor who will listen to you and help you try them. And most of all: I know you've tried. I know you've read the self-help books and bought ten planners and set up thousands of reminders and shut out all distractions and tried to just make yourself better. If you've done all that and you're at the end of your rope: get help, because it's there and it's okay to need it.
27. Something that has surprised me about living with an illness is:
I even qualify to fill out this survey. I'm a "live in the moment" person, so the longer I'm functioning well the easier it is to forget that if I stop taking those pills, I fall apart. Maybe some day I'll be brave enough to try it, but honestly? I doubt it. The Concerta works amazingly, and it has almost no side-effects, and when I do think about it, I'm terrified of going back to how I was before.
28. The nicest thing someone did for me when I wasn't feeling well was:
Tried to work with me to be able to function around the AD/HD - mostly B, though there have been others. And told me to get help, since without him saying "attention deficit disorder" I never would have considered it.
29. I'm involved with Invisible Illness Week because:
I'm not, but I saw this meme, and I've been meaning to write up a post detailing my experiences in a cohesive form. This is because I actually helped someone recently by sharing my experiences, and if I can do that again in any way, shape, or form, it's worth it. I didn't know anyone who had AD/HD when I got diagnosed, and that was scary because even though my friends and family were supportive, nobody could say "I've been there, I've seen it from where you are now, and it will get better".
30. The fact that you read this list makes me feel:
Good. I'm not shy about talking about it, but I still have a hard time being able to say, "Hi, my name is dem, and I have a learning disability". So, hi, my name is dem, and I have a learning disability.
This post has
comments at Dreamwidth.
1. The illness I live with is:
Attention Deficit/Hyperactivity Disorder
2. I was diagnosed with it in the year:
February 2009
3. But I had symptoms since:
As long as I can remember.
4. The biggest adjustment I've had to make is:
Accepting that I couldn't fix myself. All the lifestyle changes I was trying to do before, but until I got medication it never worked.
5. Most people assume:
I honestly don't really know. I know some people have assumed I had AD/HD, but probably more than said it. I think people wouldn't pick up on anything right now, except maybe think I talk a lot and fast, but before the meds, gee. A lot of things. That I'm not actually interested in our conversation because I keep getting distracted or interrupting. That I don't want to beta your fic because I haven't been able to read it all yet. That I'm lazy or a procrastinator and have terrible study habits. That I have a shitty memory. That I don't want to be an equal partner because I don't do my chores. (That one sucked.) That I'm addicted to my computer. (I wasn't: it was a coping mechanism.) So many things!
6. The hardest part about mornings is:
Getting out of bed. One of the less-obvious side-effects of my AD/HD is that I have low energy levels due to the lack of dopamine in my brain, and getting out of bed in the morning can be so, so difficult. Once I metabolize the Concerta, the sleepiness that used to follow me through the day is gone.
7. My favorite medical TV show is:
Eh. Used to watch ER a bit, seen some Grey's anatomy. Not really my thing, but not because of the AD/HD, since that was before the diagnosis.
8. A gadget I couldn't live without is:
My cellphone. I use it to set alarms all the time so that when I get distracted and forget I have to leave or do something, it reminds me. Various things perform this function for me - email, planners, alarm clocks, but the cellphone is the most portable and gadgety.
9. The hardest part about nights is:
Going to sleep before the Concerta or Ritalin wears off. Not happening - it's a stimulant for sure!
10. Each day I take [?] pills & vitamins.
30mg slow release dose of Concerta. If I have to do something in the evenings that requires above-average focus, I supplement it with a 10mg short-acting pill of Ritalin, since I find the Concerta wears off after about 12 hours.
11. Regarding alternative treatments, I:
Haven't tried too much that's really medical, just focused on the lifestyle adjustments that AD/HD requires: a LOT of organization, redundant systems of reminders and notes and back-up plans, tricks to bleed out excessive energy so it doesn't distract or bother.
I'm not in therapy, since I'm feeling sufficiently able to function on my own right now and not emotionally off-balance, and I don't actually know what non-medical options there are right now! I'm fit, I eat well, I get good sleep, I have good relationships with family and friends, and I'm not stressed out, so I don't think a lifestyle change would do anything.
12. If I had to choose between an invisible illness and a visible one, I would choose:
An invisible one. I get to control who knows this about me, and while I'm probably more happy to share than the average person, I'm glad I get that choice.
13. Regarding working and career:
I fucked up my GPA over it, though fortunately managed to keep my physics courses at par. Failing two midterms in one day was the final straw in terms of going to the doctor for help, and I dropped two courses and asked for help in another in order to make it through that semester. If I'd gotten diagnosed earlier, I probably would have had a lot better - academically and emotionally - first three years of university. I didn't, though, and this is the first semester where I get the chance to finally see if I can live up to the potential I know I have inside of me. Results pending.
Long-term, though, the undiagnosed AD/HD severely affected my career dreaming and planning. The worse it got, the more I thought I'd never be able to get a PhD or be an academic, because there was no way I'd be able to focus in such a self-directed environment. And that spiraled into not thinking I was going to be able to succeed at anything, because I was completely unable to complete tasks or plan things or learn new material in such an overwhelming way. The best thing about getting diagnosed is that I feel like I have a future in what I'm interested again.
14. People would be surprised to know:
That I've had it all my life. You don't "get" AD/HD - the diagnostic criteria for adults require it to be present throughout childhood. I was top of my class all the way to the end of high school, and I didn't fit the stereotype of aggressive, frustrated, and failing boy. But that's just how one subset of AD/HD sufferers present - I, and many other girls in particular, presented differently, and because I was a quick learner and eager to please, I managed to succeed when the material was easy enough (as it was all the way through high school).
It was only when the material - and life - got complicated enough that I was no longer able to compensate. That's what made it unbearable for me, and obvious for others. But I still had it when I was young - sometimes I wonder if I might have stuck with more extracurriculars I got bored with and gave up on despite enjoying if I'd been diagnosed younger.
15. The hardest thing to accept about my new reality is:
That this thing is real, and not something I've made up to excuse my laziness/poor habits/bad memory/procrastination. That getting a medical boost is okay. That I actually do have AD/HD, even when I've been taking the medication long enough I've forgotten what it feels like to be off it.
16. Something I never thought I could do with my illness was:
See above about being an academic. I never thought I'd be able to do anything that required self-direction, because I couldn't make myself do it, no matter how hard I tried.
17. The commercials about my illness
Hm. I don't watch much TV with ads anymore, so I don't think I've seen any since I got diagnosed, and don't recall any from before.
18. Something I really miss doing since I was diagnosed:
Napping. I can't do it when I've been taking stimulants all day, even if I'm actually underslept. Only not really, because the napping got to be a super-excessive escape from reality in the worst of ways.
19. It was really hard to give up:
Fortunately, I haven't had to give up anything.
20. A new hobby I've taken up since my diagnosis is:
Reading! Okay, that's an old-new hobby, but I lost my ability to read more years ago than I care to admit. I used to be able to hyper-focus on books as a child, but that went away, and it had been ages since I'd been able to read more than a couple chapters of any book. I missed it so, so much.
21. If I could have one day of feeling normal again, I would:
I do now, I think. I used to think the way my brain functioned was normal - it raced, it flickered, it was like constant channel-changing with multiple channels playing at once, overloading and overwhelming and sometimes making me feel physically nauseous. On the meds, that's gone. I'm lucky that though AD/HD is chronic, mine is responsive to long-used and low-side-effect drugs.
22. My illness has taught me:
That it's okay to admit you can't do it alone.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
"America is AD/HD". (Really?) "AD/HD is over-diagnosed." (Not in girls it isn't.) Both of these are just ways of saying "your disability isn't real because some of the criteria are things everybody has". That's true of every mental disability.
24. But I love it when people:
Get that even though it's not the worst or most serious or untreatable of disabilities, it fucked my life up royally and was completely emotionally, mentally, and physically overwhelming.
25. My favorite motto, scripture, quote that gets me through tough times is:
"I don't always feel lucky, but I'm smart enough to try." (Ani Difrano) Because that really describes my worldview: I've got it damned good, even when I don't, and living like I do is half the battle.
26. When someone is diagnosed I like to tell them:
YOU AREN'T LAZY, AND YOU AREN'T ALONE. And there are tried-and-true drugs that help the root of the problem that may very well help you: find a doctor who will listen to you and help you try them. And most of all: I know you've tried. I know you've read the self-help books and bought ten planners and set up thousands of reminders and shut out all distractions and tried to just make yourself better. If you've done all that and you're at the end of your rope: get help, because it's there and it's okay to need it.
27. Something that has surprised me about living with an illness is:
I even qualify to fill out this survey. I'm a "live in the moment" person, so the longer I'm functioning well the easier it is to forget that if I stop taking those pills, I fall apart. Maybe some day I'll be brave enough to try it, but honestly? I doubt it. The Concerta works amazingly, and it has almost no side-effects, and when I do think about it, I'm terrified of going back to how I was before.
28. The nicest thing someone did for me when I wasn't feeling well was:
Tried to work with me to be able to function around the AD/HD - mostly B, though there have been others. And told me to get help, since without him saying "attention deficit disorder" I never would have considered it.
29. I'm involved with Invisible Illness Week because:
I'm not, but I saw this meme, and I've been meaning to write up a post detailing my experiences in a cohesive form. This is because I actually helped someone recently by sharing my experiences, and if I can do that again in any way, shape, or form, it's worth it. I didn't know anyone who had AD/HD when I got diagnosed, and that was scary because even though my friends and family were supportive, nobody could say "I've been there, I've seen it from where you are now, and it will get better".
30. The fact that you read this list makes me feel:
Good. I'm not shy about talking about it, but I still have a hard time being able to say, "Hi, my name is dem, and I have a learning disability". So, hi, my name is dem, and I have a learning disability.
This post has
comments at Dreamwidth.