Invisible Not Broken - Chronic Illness Podcast Network

Kyros' perfectly organized show notes that I systematiclly disorganized.

Misconceptions about Invisible Illnesses

Start with an explanation of Spoon Theory! https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Things we’re tired of hearing all the time:

1. You don’t look sick. /  You look great. - When someone says, “But you LOOK good,” we really hear, “But, I don’t believe you, because I can’t see it.”
   1. That if you use a wheelchair, you have to use it all the time.
   2. That if you have a handicap placard, you must be using someone else's, because you can’t be the one who is handicapped.
   3. So, are you retired / on disability then? Just because you are disabled, doesn’t mean you can get disability (SSI).
   4. Just because a person has a disability does not mean they are disabled.  Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. While still others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities or need assistance with their care.
   5. Therefore, if a person is displaying a license to park in an accessible parking space, try offering a hand, instead of a visual judgment. After all…the people you are graciously intending to defend, may be standing right in front of you!”
   6. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker
      1. https://invisibledisabilities.org/ida-getting-the-word-out-about-invisible-disabilities/defining-invisible-disability/
      2. https://www.census.gov/sipp/
2. But you were fine yesterday.
   1. You just want attention
   2. Munchausen syndrome or ‘factitious disorder’ – where people feign illness to gain attention or sympathy.”
3. If you were really in that much pain it would show.
   1. A lot of pressure to not show pain / anything but a positive emotion.
4. You’re too young to be disabled.
5. It must be nice to get to stay home all day. / I wish I could stay home all day.
   1. smoking pot all day.
   2. We’re lazy. A drain on society. Bad parents.
   3. Just because we are home, we can’t contribute.
   4. Many people don’t realize that when you are not working, there are repercussions. 
      1. No social contact
      2. Lonliness
      3. The benefits of interacting with people disappear
      4. Financial hardships
      5. Social isolation
      6. Negative stereotypes - Working is way easier that being disabled
      7. Have to contend with not only losing the ability to do the things you want to do, but also fight with loved ones who sometimes don’t believe us, or understand us.
      8. I’m mourning the loss of the life I lived before, while simultaneously fighting friends and family who treat me like it’s not real, not that bad, or that I’m being lazy.
   5. What do you do all day?
   6. You must have so much free time.
   7. Pressure to make the most of your free time.
6. Why don’t you just go to the hospital if you hurt that much. / Aren’t you better yet? 
   1. Doesn’t your insurance cover all that?
   2. Medication is a double edge sword. Sometimes you have to take 1 pill for a problem and then another for the side-effect of that first pill, and so on and so on.
   3. The assumption that the Doctor always knows best, because offtimes, you might be the one who knows the most about your problem/ your doctor may never have heard of your problem before.
   4. That doctors will keep trying to figure out what’s wrong with you without being hounded to do so.
   5. We didn’t do anything to deserve this or you brought it on yourself
   6. And this gets worse with age/being overweight because they blame everything on your age / weight
7. You must feel so guilty about:
   1. Taking care of the kids
   2. Taking care of the house
   3. Not contributing
   4. Not working / supporting yourself
   5. Draining resources from the family
   6. Being a burden
   7. Not being able to play with the pet / walk pets.
8. Just because I’m on opioids / marijuana does not mean I’m a drug addict.
9. People think they understand what pain / exhaustion are like. It’s different when it’s EVERY day, not just once in awhile.
10. 10.You’re so inspiring. (Well done not dying!) and trying to live up to that.
    1. You should either be pollyanna or crying all the time.
    2. Your partner must be a saint for sticking with you through this or marrying you anyway.
    3. We don’t want to give up. We make the effort to smile, laugh, pretend that everything is okay, look our best, and try to enjoy life as best as we can.
    4. This is a double edged sword though. By trying our hardest to not show pain or illness, we end up feeding into the prevailing assumption that we aren’t really in pain or sick. People assume that since we look good, we are doing better / not hurting. This couldn’t be farther from the truth. 
    5. Sometimes the reason we try so hard to look good / not show our illness is that WE want to forget, even if just for a moment, how hard our daily life is and how much we miss the life we used to have.

https://undark.org/article/mystery-diseases-syndromes-health-care/

https://www.youtube.com/user/invisiblenomoretv