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My 50 Shades of Disability

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I cannot work.

It is not that I do not want to work.

I cannot.

It has nothing to do with accommodations, laziness, lack of work ethics… It has everything to do with my health. I have Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). My sons have it also, and they are on the autism spectrum. In other words, physical disability, mental disability, and chronic illness.

The news is great about getting the word out for accommodations in the workplace and in schools. “You can do anything!” The problem is people seem to only see what is right in front of them. There is no gray area. Some people can’t do as much, and that’s all right!

Some of the items listed below are from friends, worded as if it’s me. It’s to make a point. I would like to share my 50 shades of disability, the grays.

1. If you have met one person with a disability, you have met one person.

2. “Disability” and “chronic illness” are two entirely different phrases. Some people have both titles.

3. You wouldn’t ask someone who is mute to talk. Do not ask someone who is chronically ill to “stop being lazy.”

4. It’s absolutely fabulous that your second cousin twice removed who is in a wheelchair is the head of that accounting firm. I cannot do that. I’m OK with that.

5. Your autistic coworker is great with numbers? Fabulous. Of course that means all autistic people are great with numbers, can cope in a working environment, and have social skills reminiscent of a bee in a hive.

6. Yes, cats can cure depression and anxiety and any other manner of mental illness. Those memes on Facebook must be true. I will go get myself 20 cats right away.

7. You twisted your ankle and now you know how I feel dislocating my joints up to 20 times a day? Yes, thanks so much for sharing that bit of invaluable sympathy.

8. Your 95-year-old grandfather uses a wheelchair and you got to sit in it for an hour, so you know my experience? Did you try squeezing that thing in a public “wheelchair-accessible” bathroom stall? Now you know how five cats in one cat carrier feel.

9. You see me walk to the store… I must not be disabled. That doctor degree of yours sure comes in handy.

10. You think I have the same level of disability every day, like I can’t have bad days or good days like everyone else.

11. On my bad days, you think I am being lazy and not trying hard enough.

12. On my good days, I must be “getting better.” The word you are missing here is “chronic.”

13. If I hear, “Be brave,” “Be strong,” “I couldn’t deal with what you deal with,” one more time…

14. Try talking to me like you’d want to be talked to. Praise and encouragement are welcomed.

15. I am not your inspiration. You are just as inspiring as I am. We all can do what we can do.

16. Some days I can exercise for an hour. Some days I do not get out of bed. Do not misinterpret what you hear as my “normal.”

17. You most likely see me on my good days. I don’t visit on my bad days. Do not take it personally. It’s not you. It’s not me. It’s my health.

18. The little things deserve praise. If I get my hair washed by myself, I deserve a billboard, a medal, a trophy… at least bring me a tea and a donut.

19. I have pets. Do not automatically mistake them as service or therapy animals. Yes, I am capable of caring for them.

20. If you see someone with a service animal, or any animal in a public environment, do not touch. The pet could be a service animal and is working. You could harm the person by interfering with the animal.

21. Respect. Role model. Reverent. Rambunctious. Rowdy. Radiant. Radical. All acceptable adjective R-words. “R*tard” is not acceptable. I do not want to hear that word coming from your mouth or your children’s mouths. Teach respect.

22. No, I do not want you to “just carry [me] inside the house” if it is not accessible. That hurts. My joints fall out. For some people that may work. So thank you for offering.

23. I don’t look sick? You don’t look ignorant. “96% of people with chronic medical conditions live with an illness that is invisible.”

24. I need this parking permit. You do not get to decide that. You are not my doctor. My doctor issued it. I do not need to disclose my reason for using it. I didn’t sign a confidentiality act with you.

25. Thank you for offering to hold the door open for me. That is polite and something you would do for anyone so I’m OK with that. No thank you for pushing my wheelchair. It’s like you grabbed my legs and are walking for me. Offering is OK, but just grabbing and doing it, not OK.

26. Do not put things in my grocery shopping cart. I am aware there are six bags of chips along side six frozen bags of broccoli and a box of salt with five cases of bottled water. I know it’s an oxymoron. Stop throwing in pasta saying I’m too skinny. I can’t eat that without dire consequences. I know there is whole wheat bread, next to white bread, next to gluten-free bread in my cart. Our family has odd diet necessities. I’m not judging your need five boxes of cookies with five liters of diet Pepsi.

27. I’m aware I use a makeup box to keep track of my weekly medications. It’s bigger and holds more.

28. My use of opioids does not mean I am an addict. It means my doctor agreed that my pain levels are excruciatingly high. The reason you do not see this pain is because I took my opioid.

29. I am aware of the “Look at what I can do even though I have this and this…” posts. I think it’s fantastic I can put my own socks on without hurting myself. Every accomplishment is a wonderful accomplishment!

30. I do mourn. I am mourning. I mourn the person I use to be. I mourn the people my children were going to be. I mourn with each setback. Please comfort me. Hold me. Be patient with me. I will be back to my regular, sarcastic, cheery self again soon.

31. Chronic illness is like a cocktail. We are all mixed differently with different ingredients.

32. Teach your children tolerance is for disabilities and chronic illnesses too. Bullying and discrimination is much too common in the classrooms, especially among students with special needs. It carries over into real life, and my children encounter it when they are out.

33. What I have is real. It might not seem real when I have my ankle wrapped one day and I’m walking on it the next. I know my body. Respect that.

34. You think because I have autism, I must have a savant ability. Stop asking me. I do not have one. Unless you count sarcasm.

35. When you tell me I can’t be that bad off because I’m young, I want to hurt you. Children can have arthritis, pain, illnesses that you do not see, just like adults. My body feels over 80 years old inside. I’m not exaggerating. It really is that bad off.

36. I can crochet beautiful works of art. You don’t realize it took me a month to make that dishcloth. Thank you for your compliments because they do encourage me to continue, and it’s great therapy!

37. Be patient with me. Do not cut me off when I’m talking. I am fully aware it’s taking me a long time to pronounce my words properly and get my thoughts out.

38. Standardized tests are for standardized thinkers.

39. I am trying. Believe me. I am trying my hardest.

40. Do not compare yourself with me. “I feel so awful, but I’m not as bad off as you.” That just puts chronic-shaming on me. What you are going through may feel awful for you. What I am going through may feel awful for me. Both of us need a hug.

41. I parent my children. I welcome advice and ideas. I do not welcome you jumping in to say things like “You need to calm down.” to my child. I’m right here. I am fully aware my child is having a meltdown. You do not parent my children. Parent your own children.

42. “Exercise cures all kinds of ailments. If you got up more, (out more, did this more… that more…)” This is unsolicited advice. My symptoms began when I was running a 5k daily. According to you, I should be superwoman!

43. Do not tell me how lucky I am to stay home all day or lay in bed all day. My bed sores, boredom, lack of socializing, and fun-o-meter disagrees with you.

44. I know I promised to attend that event. My body decided it had other plans today, and I’m spending my time feeling guilty I couldn’t make it. Please understand and know I want to be there.

45. I know I look fabulous. I am fabulous. I do not feel fabulous. I’m chronically fabulous.

46. One minute I’m going nonstop and the next I’m collapsed and dozing off in my chair. It’s called an adrenalin rush, and I have no control over it. Sorry we are cutting our visit short.

47. You do not see my pain. I feel my pain. Please believe me.

48. I love you. You are my friend. Please stay my friend even though this illness is an inconvenience for you. I need you to listen, understand, and be patient. This illness is all I have now. I understand how inconvenient it is for you.

49. I will get depressed from time to time because I see what others can do and I can’t do it. Remind me of what I can do. Tell me it will be OK. Cry with me. We all need a friend.

50. I know I’m complaining a lot or it appears that way. Sometimes I’m not complaining, just telling you the facts. “I dislocated my shoulder three times” is not a complaint. It really happened. “I dislocated my shoulder so many times and now I’m in agony, throw me chocolate” is more of a complaint… and a suggestion.

51. Thank you. Thank you for listening. Thank you for believing me. Thank you for driving me to therapy and doctor appointments and making me laugh in waiting rooms all over the place. We are all individuals. You have your life, and I have mine. Thank you that we can be a part of each other’s.

Support someone with 50 shades of kindness and understanding today.

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Stock photo by Eucalyptys

Originally published: November 11, 2016
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