The benefits of being open about illness
Mar. 18th, 2013 08:19 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
alee_grrlETA: This post is based solely on my own experience and not everyone is always so helpful or kind. Like so many things you have to consider each situation and the people involved when decided whether to be open about illness. These are just some of my reflections on the positives that can come out of talking about illness and disability.
In my experience one of the hardest things for those with chronic illness (at least here in the US) is when and where to disclose the illness, and when and how to ask for accommodations/help. When I started Lyme treatment I made a conscious to be try to be open and honest with my school administration, professors and classmates. It was a hard decision to make as our culture is so very critical of those with invisible disabilities, chronic illnesses (especially illnesses that are not well understood or frequently discussed in the media), and anything that might be seen as weakness.
As I think about it I realize another reason it was a hard decision for me personally to make. My mother is mentally ill, but refuses to acknowledge her illness at all. She always made a big deal out of anything she did for us and would always frame things with the idea that she had sacrificed her own health and well-being for us. She was masterful at playing the martyr, and she could lay down an Olympic level guilt trip. She was also the main contributor to my own warped understanding of my health and well-being (though a few doctors helped cement the ideas). My symptoms were just me trying to get attention; I was lying to get sympathy and affection. I was really just lazy. People were going to know that I was...insert pejorative here (crazy, stupid, lazy, etc).
Turns out it was all lies. Not a damn one of those statements was true. I was not lazy, I had an auto-immune disease that was slowly destroying my nervous and endocrine systems. The mental health issues I have were a combination of Lyme and abuse. Being a bit of an introvert I do not like being the center of attention very much, so that lie was apparent to me earlier than others.
I started talking about being a survivor because I could not keep quiet anymore. I needed to talk to others about my experiences because I felt like the secrets, lies, and pain would eat me alive from the inside out if I did not. Once I started sharing, and in turn hearing others' stories of survival, I realized just how powerful being talking is. By speaking about our experiences we learn we are not alone. We share the hard-won knowledge our experience has gained us. We hear and acknowledge our shared experiences. Done right it is not about who has the worst scars, but instead about understanding, acceptance and healing. Talking takes away the power our abusers gained with our silence. We shine light into the shadows and they can no longer hide. We educate those who may not have experienced the same thing. We show them that we are capable amazing people, and being a survivor is only a part of who we are.
All the same things apply to disability and chronic illness. Talking helps us find our communities, helps educate others, and brings light to the problems of our ablistic culture. But talking about these things is hard. It is deeply personal and dealing with bad reactions and assholes can set a person back days. But it can also be worth it. My professors and classmates have been incredibly supportive, far more than I had ever hoped they would be.
Today I scheduled a meeting with one of my professors to discuss the difficulties I've been having. His class is one of the ones that requires a 20 page paper in place of a final. Our first draft is due next week Monday. I have another 20 page research paper that was supposed to be due tomorrow at 5:00, and spent most of my spring break working on that paper. I have not started writing the draft for this professors class. I also have to do my reading for the classes that I have this week.
Treatment has been very effective and I am getting betting, but that means that my brain and body can start negatively reacting to older medication (like my antidepressants) because it no longer needs as much help. My antidepressant was started to overstimulate me, leaving me feeling like my skin was crawling and that someone had turned the gravity up (everything was just so much harder and more tiring). This did not help my concentration and writing ability. After many chats with my sisters (and fellow Lyme sufferers), I had to acknowledge that I am still really effing sick and that it is still okay to ask for help.
I hadn't spoken with this professor about my illness, though I have worked with him and had his classes before. I was diagnosed after my first year, and didn't have any classes with him my second year. He is our LGBT student group adviser, but I don't think he had been there when I broached the topic of my health. Since they wanted to elect me secretary I felt it was a pertinent issue, but the other members of the group just said to let them know if I needed help and to delegate when necessary and elected me anyway. So I wasn't sure if my prof had been aware of the health issues and scheduled a meeting.
I was just going to ask for a couple of days extra time. But he was very nice and supportive and gave me an additional week. He noted how hard it must be to disclose such concerns and thanked me for doing so. One of the things he said as we were wrapping up the chat really hit me though. He told me that I had been extremely helpful to him and done so much for our student group that the least they could do was help me in return.
I also talked to my other professors who are in charge of the paper that is due tomorrow. They were happy to give me a little extra time. Mostly the first draft deadlines are used to make sure people do some work at an earlier time and don't leave this very important assignment (it's a graduation requirement) until the last minute. They were not worried about me getting the work done, and so were happy to accommodate me. If I had not been willing to discuss my illness, nor ask for help, I would probably make myself sicker with the stress of it all.
In my experience one of the hardest things for those with chronic illness (at least here in the US) is when and where to disclose the illness, and when and how to ask for accommodations/help. When I started Lyme treatment I made a conscious to be try to be open and honest with my school administration, professors and classmates. It was a hard decision to make as our culture is so very critical of those with invisible disabilities, chronic illnesses (especially illnesses that are not well understood or frequently discussed in the media), and anything that might be seen as weakness.
As I think about it I realize another reason it was a hard decision for me personally to make. My mother is mentally ill, but refuses to acknowledge her illness at all. She always made a big deal out of anything she did for us and would always frame things with the idea that she had sacrificed her own health and well-being for us. She was masterful at playing the martyr, and she could lay down an Olympic level guilt trip. She was also the main contributor to my own warped understanding of my health and well-being (though a few doctors helped cement the ideas). My symptoms were just me trying to get attention; I was lying to get sympathy and affection. I was really just lazy. People were going to know that I was...insert pejorative here (crazy, stupid, lazy, etc).
Turns out it was all lies. Not a damn one of those statements was true. I was not lazy, I had an auto-immune disease that was slowly destroying my nervous and endocrine systems. The mental health issues I have were a combination of Lyme and abuse. Being a bit of an introvert I do not like being the center of attention very much, so that lie was apparent to me earlier than others.
I started talking about being a survivor because I could not keep quiet anymore. I needed to talk to others about my experiences because I felt like the secrets, lies, and pain would eat me alive from the inside out if I did not. Once I started sharing, and in turn hearing others' stories of survival, I realized just how powerful being talking is. By speaking about our experiences we learn we are not alone. We share the hard-won knowledge our experience has gained us. We hear and acknowledge our shared experiences. Done right it is not about who has the worst scars, but instead about understanding, acceptance and healing. Talking takes away the power our abusers gained with our silence. We shine light into the shadows and they can no longer hide. We educate those who may not have experienced the same thing. We show them that we are capable amazing people, and being a survivor is only a part of who we are.
All the same things apply to disability and chronic illness. Talking helps us find our communities, helps educate others, and brings light to the problems of our ablistic culture. But talking about these things is hard. It is deeply personal and dealing with bad reactions and assholes can set a person back days. But it can also be worth it. My professors and classmates have been incredibly supportive, far more than I had ever hoped they would be.
Today I scheduled a meeting with one of my professors to discuss the difficulties I've been having. His class is one of the ones that requires a 20 page paper in place of a final. Our first draft is due next week Monday. I have another 20 page research paper that was supposed to be due tomorrow at 5:00, and spent most of my spring break working on that paper. I have not started writing the draft for this professors class. I also have to do my reading for the classes that I have this week.
Treatment has been very effective and I am getting betting, but that means that my brain and body can start negatively reacting to older medication (like my antidepressants) because it no longer needs as much help. My antidepressant was started to overstimulate me, leaving me feeling like my skin was crawling and that someone had turned the gravity up (everything was just so much harder and more tiring). This did not help my concentration and writing ability. After many chats with my sisters (and fellow Lyme sufferers), I had to acknowledge that I am still really effing sick and that it is still okay to ask for help.
I hadn't spoken with this professor about my illness, though I have worked with him and had his classes before. I was diagnosed after my first year, and didn't have any classes with him my second year. He is our LGBT student group adviser, but I don't think he had been there when I broached the topic of my health. Since they wanted to elect me secretary I felt it was a pertinent issue, but the other members of the group just said to let them know if I needed help and to delegate when necessary and elected me anyway. So I wasn't sure if my prof had been aware of the health issues and scheduled a meeting.
I was just going to ask for a couple of days extra time. But he was very nice and supportive and gave me an additional week. He noted how hard it must be to disclose such concerns and thanked me for doing so. One of the things he said as we were wrapping up the chat really hit me though. He told me that I had been extremely helpful to him and done so much for our student group that the least they could do was help me in return.
I also talked to my other professors who are in charge of the paper that is due tomorrow. They were happy to give me a little extra time. Mostly the first draft deadlines are used to make sure people do some work at an earlier time and don't leave this very important assignment (it's a graduation requirement) until the last minute. They were not worried about me getting the work done, and so were happy to accommodate me. If I had not been willing to discuss my illness, nor ask for help, I would probably make myself sicker with the stress of it all.
no subject
Date: 2013-03-19 03:53 am (UTC)no subject
Date: 2013-03-19 03:08 pm (UTC)It might still be worth talking with bosses, co-workers, friends and family about. Depending on your level of comfort. I occasionally had to do this before I was diagnosed with Lyme and really didn't have a clue what was wrong. I would usually frame it by saying that I was having difficulty with health issues and working with doctors to determine the problem, but really needed help with 'x' right now.
no subject
Date: 2013-03-21 01:33 am (UTC)Also, I hadn't gotten any positive feedback for days. Yesterday I met someone who asked me if I wanted to sell my little quilts at her in-home show in Dec. I am seriously thinking about it. Very exciting. And I taught hand beading and felt competent!
I am also thinking about areas of stress and how I might affect them. I think I should probably cut some people from my flist -- more due to connection issues than anything like rancor. It's just a huge volume of stuff, you know? (I'm talking LJ, not DW).
I think dh's irritation with his current woodworking project is stressing me out too, so I'm trying not to take that on either.
I don't think it's any one big thing, but it does add up.
Thanks for talking with me about it!
no subject
Date: 2013-03-21 02:23 pm (UTC)I find that it is often the little things adding up to become one big thing. Then the hard part for me is detangling the mass of stress and other emotions and trying to figure out the base problems and come up with ways to try to alleviate them.
Trying not to take on the stress of family and friends can be a difficult thing, especially when you live with them.
Glad to chat with you about it. I know that talking things out with my friends is one of the ways I figure things out.
no subject
Date: 2013-03-21 06:45 pm (UTC)Thank you! Talking is definitely a way I figure out problems.
no subject
Date: 2013-03-19 10:38 am (UTC)*sends good thoughts*
no subject
Date: 2013-03-19 03:11 pm (UTC)no subject
Date: 2013-03-19 11:54 am (UTC)no subject
Date: 2013-03-19 03:14 pm (UTC)no subject
Date: 2013-03-19 07:22 pm (UTC)So. Anyway. Go you!
no subject
Date: 2013-03-19 08:01 pm (UTC)So, hugs! And thank you!
no subject
Date: 2013-03-20 01:04 pm (UTC)no subject
Date: 2013-03-20 05:31 pm (UTC)