bluewind95
2012-09-11, 04:20 PM
So this week is Invisible Illness Awareness Week. I'm sure many of us have this problem... we're ill, but we don't look sick, or not sick enough. And people, well, they don't understand this, and they judge us negatively. They think we're exaggerating, we can't really be sick. And the thing is... they really just don't know. It's hard for people to grasp that which they can't feel. And that's why it's important to create awareness about these things. So that people can know and have empathy.
From physical ailments like fibromyalgia, MS, lupus... to mental disorders like depression and many others, I'm sure many of us have a lot to share. And those who do not have any such thing can still share a lot about their experience.
I heard about this because a blogger shared the fact prominent bloggers were asked to participate via 30 questions. I'm sharing them here and providing my answers too. And I quite encourage people to participate too!
The questions:
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I've had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn't live without is:
9. The hardest part about nights are:
10. Each day I take:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I'd like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn't feeling well was:
29. I'm involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
My answers:
1. The illness I live with is: fibromyalgia, dysautonomia, as-of-yet-unidentified-joint-aches
2. I was diagnosed with it in the year: 2009.The third illness is as yet undiagnosed, but recognized to be there.
3. But I had symptoms since: 1991, perhaps sooner. The third illness started late 2010, became established early 2011.
4. The biggest adjustment I've had to make is: Trying to do everything in my mind with such little energy to spare. Having to accept that I will likely never be able to work as I wished to and planned to.
5. Most people assume: That I'm exaggerating my symptoms, that my illnesses don't exist, that it's "all in my head"
6. The hardest part about mornings are: Getting up, really. When sleep is no restful and then every bit of my mind is fighting to so much as stay awake past a few seconds, when my heartbeat is making itself felt strongly, when I don't feel like the blood is getting to my head, when I feel lightheaded if I sit up, just getting up can be a formidable task. And then I have to slog through whatever I need to do with a brain fog that makes everything like it's in slow motion.
7. My favorite medical TV show is: None! I don't really watch TV.
8. A gadget I couldn't live without is: The computer! It's an incredible outlet for creative energy that takes less physical effort than many other things I could do. And when I'm too tired, I can just read till even that is too much. Also my cane. That thing has saved me from more bumps and bruises and falls than I can count by now.
9. The hardest part about nights are: to try to sleep with pain so sharp it makes me want to cry instead (and often actually does make me cry). To know that every precious second of sleep I'm losing will make it that much harder to get up on the morrow.
10. Each day I take: just the medication for the dysautonomia (a beta blocker). The fibromyalgia has refused all treatment and I refuse to take medication that does nothing for me. The third isn't fully identified yet, so taking medication for it is out of the question. Painkillers haven't done anything for it, though.
11. Regarding alternative treatments I: don't believe in most of them anymore. I've tried some for various ills, but they never worked.
12. If I had to choose between an invisible illness or visible I would choose: Possibly invisible. Visible illnesses have people judge you immediately. With invisible ones, at least you mostly get the benefit of the first impression.
13. Regarding working and career: I'm sure that, when I can actually start treating the third illness, I will be able to remake my life in this area. And in the meantime, I can look for something to do that I can actually manage.
14. People would be surprised to know: My complaints about my illnesses are far, far less than the pain and discomfort I feel from them. I will not cry if you are watching. Or listening. I will just grit my teeth, wince less than half the time I feel like doing so, and just walk and try to keep up till I am totally overwhelmed. Then I'll ask for a wheelchair, if you please.
15. The hardest thing to accept about my new reality has been: Feeling useless. Having to give up on the dreams and plans I already had.
16. Something I never thought I could do with my illness that I did was: Maintain a fairly good mobility and at least that kind of independence. Sure, financial independence went down the drain, but I can still move of my own free will, even in the worst days. I also have gotten better at handling a wheelchair, which I also thought I might not get to be able to do, what with the joint pain. I have traveled, I have been on my own. Aside from being slower, I can keep a fairly good independence on daily activities. Now to work on the financial area!
17. The commercials about my illness: There are none here.
18. Something I really miss doing since I was diagnosed is: Spending more time talking to friends. Also having a much less foggy memory. And running. And jumping. And running up the stairs, and running down and jumping the last 3-5 stairs.
19. It was really hard to have to give up: My time. My energy. My JOB. My dreams that revolved around my professional development.
20. A new hobby I have taken up since my diagnosis is: Writing even more. Forums. Reading. Videogames. Oh, and sewing when I can. That one is new. The others are more expanding on the hobbies I already had.
21. If I could have one day of feeling normal again I would: I would run. I would run and jump EVERYWHERE. I'd climb. I'd swim. I'd climb a tree. I'd jump down. I'd get to one of those wall thingies to scale. I'd stay up ALL night.
22. My illness has taught me: I'd have to agree that in part it has taught me who my friends are. Those that have stayed with me through the good... well it's easy to do that. Those who have also stayed with me through the bad patches, through the illness-amplified depressions, through the anger, the frustration, the pain. Those are the people who truly care. And those are the people I treasure most. Even if I don't talk to them often (there's at least one lovely person with too much on his plate that I rarely talk to, but I do treasure).
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you can't be sick! You're too young/pretty to be sick! It's all in your head! You might even be exaggerating!" Illness does not respect age. What about the thousands of little kids that are dying from some illness right now? So yeah being young and "pretty" isn't going to make the illness go away. As for the "it's all in your head"... No! Are you trying to say I LIKE being sick? That some part of me loves the pain and the exhaustion that keeps me from things I want to do?! That I enjoy being useless and dependent on other people for sustenance? Trust me, if it were all in my head, if somehow willpower could cure me... I'd be doing that stuff I wrote in the "what I'd do if I had one day of being normal". As for exaggerating... no. If I say I can't walk, I mean it. If I say I can't move my leg anymore, I mean it. And if I say I need that cane to walk, I also mean that. I'm not going to tell you that I feel 100% bad if I feel 50% bad. A little trust is appreciated.
24. But I love it when people: don't judge me and are actually kind. Small generosities, just a smile when you say hi, holding the door open for me if you see I'm having a hard time, a small note to tell me to cheer up. Just small generosities. I'll try to return them, too.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I just think of my treasured friends and family and do my best.
26. When someone is diagnosed I'd like to tell them: It's okay to ask for help. It's okay to get treatment. You can make a big difference by becoming your own advocate.
27. Something that has surprised me about living with an illness is: How unprepared places really are for people with some kind of disability. The lack of ramps is appalling. And then there was that bank which had a ramp to get into the premises... but then stairs to get to where you actually do business at.
28. The nicest thing someone did for me when I wasn't feeling well was: Oh, there's so many. But the empathy my mother feels... her trusting me that I'm really not making it up or exaggerating... the many hours of comfort and distraction provided by a friend, and also just keeping up with my slow pace even though it was hard for them to do so... and the empathy from other friends. Those things are just awesome.
29. I'm involved with Invisible Illness Week because: simply because if my being open about these things can help any one person in the world... it's worth that effort. It's hard for people to accept and understand that which they can't see or feel, and this brings terrible judgements on people with invisible illnesses. Because people look at them and can't understand that they truly are that sick, that they truly feel that unwell. I think being open about it, explaining what it's like... it can help people understand, and maybe way down the line at least one person will be judged less harshly because of it.
30. The fact that you read this list makes me feel: THankful. Hopeful that I have created some kind of awareness.
From physical ailments like fibromyalgia, MS, lupus... to mental disorders like depression and many others, I'm sure many of us have a lot to share. And those who do not have any such thing can still share a lot about their experience.
I heard about this because a blogger shared the fact prominent bloggers were asked to participate via 30 questions. I'm sharing them here and providing my answers too. And I quite encourage people to participate too!
The questions:
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I've had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn't live without is:
9. The hardest part about nights are:
10. Each day I take:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I'd like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn't feeling well was:
29. I'm involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
My answers:
1. The illness I live with is: fibromyalgia, dysautonomia, as-of-yet-unidentified-joint-aches
2. I was diagnosed with it in the year: 2009.The third illness is as yet undiagnosed, but recognized to be there.
3. But I had symptoms since: 1991, perhaps sooner. The third illness started late 2010, became established early 2011.
4. The biggest adjustment I've had to make is: Trying to do everything in my mind with such little energy to spare. Having to accept that I will likely never be able to work as I wished to and planned to.
5. Most people assume: That I'm exaggerating my symptoms, that my illnesses don't exist, that it's "all in my head"
6. The hardest part about mornings are: Getting up, really. When sleep is no restful and then every bit of my mind is fighting to so much as stay awake past a few seconds, when my heartbeat is making itself felt strongly, when I don't feel like the blood is getting to my head, when I feel lightheaded if I sit up, just getting up can be a formidable task. And then I have to slog through whatever I need to do with a brain fog that makes everything like it's in slow motion.
7. My favorite medical TV show is: None! I don't really watch TV.
8. A gadget I couldn't live without is: The computer! It's an incredible outlet for creative energy that takes less physical effort than many other things I could do. And when I'm too tired, I can just read till even that is too much. Also my cane. That thing has saved me from more bumps and bruises and falls than I can count by now.
9. The hardest part about nights are: to try to sleep with pain so sharp it makes me want to cry instead (and often actually does make me cry). To know that every precious second of sleep I'm losing will make it that much harder to get up on the morrow.
10. Each day I take: just the medication for the dysautonomia (a beta blocker). The fibromyalgia has refused all treatment and I refuse to take medication that does nothing for me. The third isn't fully identified yet, so taking medication for it is out of the question. Painkillers haven't done anything for it, though.
11. Regarding alternative treatments I: don't believe in most of them anymore. I've tried some for various ills, but they never worked.
12. If I had to choose between an invisible illness or visible I would choose: Possibly invisible. Visible illnesses have people judge you immediately. With invisible ones, at least you mostly get the benefit of the first impression.
13. Regarding working and career: I'm sure that, when I can actually start treating the third illness, I will be able to remake my life in this area. And in the meantime, I can look for something to do that I can actually manage.
14. People would be surprised to know: My complaints about my illnesses are far, far less than the pain and discomfort I feel from them. I will not cry if you are watching. Or listening. I will just grit my teeth, wince less than half the time I feel like doing so, and just walk and try to keep up till I am totally overwhelmed. Then I'll ask for a wheelchair, if you please.
15. The hardest thing to accept about my new reality has been: Feeling useless. Having to give up on the dreams and plans I already had.
16. Something I never thought I could do with my illness that I did was: Maintain a fairly good mobility and at least that kind of independence. Sure, financial independence went down the drain, but I can still move of my own free will, even in the worst days. I also have gotten better at handling a wheelchair, which I also thought I might not get to be able to do, what with the joint pain. I have traveled, I have been on my own. Aside from being slower, I can keep a fairly good independence on daily activities. Now to work on the financial area!
17. The commercials about my illness: There are none here.
18. Something I really miss doing since I was diagnosed is: Spending more time talking to friends. Also having a much less foggy memory. And running. And jumping. And running up the stairs, and running down and jumping the last 3-5 stairs.
19. It was really hard to have to give up: My time. My energy. My JOB. My dreams that revolved around my professional development.
20. A new hobby I have taken up since my diagnosis is: Writing even more. Forums. Reading. Videogames. Oh, and sewing when I can. That one is new. The others are more expanding on the hobbies I already had.
21. If I could have one day of feeling normal again I would: I would run. I would run and jump EVERYWHERE. I'd climb. I'd swim. I'd climb a tree. I'd jump down. I'd get to one of those wall thingies to scale. I'd stay up ALL night.
22. My illness has taught me: I'd have to agree that in part it has taught me who my friends are. Those that have stayed with me through the good... well it's easy to do that. Those who have also stayed with me through the bad patches, through the illness-amplified depressions, through the anger, the frustration, the pain. Those are the people who truly care. And those are the people I treasure most. Even if I don't talk to them often (there's at least one lovely person with too much on his plate that I rarely talk to, but I do treasure).
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you can't be sick! You're too young/pretty to be sick! It's all in your head! You might even be exaggerating!" Illness does not respect age. What about the thousands of little kids that are dying from some illness right now? So yeah being young and "pretty" isn't going to make the illness go away. As for the "it's all in your head"... No! Are you trying to say I LIKE being sick? That some part of me loves the pain and the exhaustion that keeps me from things I want to do?! That I enjoy being useless and dependent on other people for sustenance? Trust me, if it were all in my head, if somehow willpower could cure me... I'd be doing that stuff I wrote in the "what I'd do if I had one day of being normal". As for exaggerating... no. If I say I can't walk, I mean it. If I say I can't move my leg anymore, I mean it. And if I say I need that cane to walk, I also mean that. I'm not going to tell you that I feel 100% bad if I feel 50% bad. A little trust is appreciated.
24. But I love it when people: don't judge me and are actually kind. Small generosities, just a smile when you say hi, holding the door open for me if you see I'm having a hard time, a small note to tell me to cheer up. Just small generosities. I'll try to return them, too.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I just think of my treasured friends and family and do my best.
26. When someone is diagnosed I'd like to tell them: It's okay to ask for help. It's okay to get treatment. You can make a big difference by becoming your own advocate.
27. Something that has surprised me about living with an illness is: How unprepared places really are for people with some kind of disability. The lack of ramps is appalling. And then there was that bank which had a ramp to get into the premises... but then stairs to get to where you actually do business at.
28. The nicest thing someone did for me when I wasn't feeling well was: Oh, there's so many. But the empathy my mother feels... her trusting me that I'm really not making it up or exaggerating... the many hours of comfort and distraction provided by a friend, and also just keeping up with my slow pace even though it was hard for them to do so... and the empathy from other friends. Those things are just awesome.
29. I'm involved with Invisible Illness Week because: simply because if my being open about these things can help any one person in the world... it's worth that effort. It's hard for people to accept and understand that which they can't see or feel, and this brings terrible judgements on people with invisible illnesses. Because people look at them and can't understand that they truly are that sick, that they truly feel that unwell. I think being open about it, explaining what it's like... it can help people understand, and maybe way down the line at least one person will be judged less harshly because of it.
30. The fact that you read this list makes me feel: THankful. Hopeful that I have created some kind of awareness.