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Please Stop Making Rules About How People Can Talk to Me

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I’m getting a wee bit tired of it. I’ve now read the following:

  • Never tell someone with a disability they can do something because then it seems like you are not validating their disability or you don’t believe it.
  • Never tell someone with a disability they can’t do something. That’s not for you to decide and you shouldn’t put limitations on someone.

Those two rules contradict themselves, so basically just never talk to someone with a disability. It’s the safest option. Just to give you an idea of some other articles floating around:

  • 7 Things Never to Say to People with Disabilities
  • Here’s 5 Things You Can Say to Someone with a Disability
  • How to Interact with People Who Have Disabilities
  • 10 Things You Shouldn’t Say to Someone with a Chronic Illness
  • Talking to Someone with a Chronic Illness
  • 10 Commandments for Interacting with the Chronically Ill

The list goes on and on. For as much as we’re still going with the whole “we’re all equal” thing, I sure feel like the focus is definitely only on my health, and there are apparently a lot of things you can do wrong when talking to me. Do we need to write up lists of how to talk to people of different race, religion or political preference (I have a lot of jokes here, but take a moment to admire my maturity and restraint)? Didn’t your ma or pa at some point teach you how to talk to humans, and shouldn’t that be the only guidebook we really need?

The bottom line is this: I get to decide my feelings. How I choose to interpret the words people say to me is my choice. It’s worth considering who the person is and the way they’ve talked to you in the past or before your disability. Are they speaking out of a place of anger? Do they frequently try to belittle you or put you down? I have friends tell me all the time, “You look good” or “At least you don’t look sick.” Now before reacting, I get to choose if 1) they are trying to be kind and encouraging or 2) they are trying to imply I’m not sick and should get back to work because I’m obviously fine. People spend most of their life learning it’s rude to tell people they look like crap. Also, when I save up the energy to do my hair and makeup and get dressed, I do look good (unless I’m unconscious or throwing up, nothing else is really visible). And hey, I did do my eyeliner, and thanks for noticing!

We as a collective people, not just those with a chronic illness or disability, may need to be a little bit less sensitive overall because holy cow, after reading all of those lists I feel worn out and discouraged about talking to anyone. I read an article this morning that said you should not say to someone, “you’re a burden on society.” Who are these people? If they are your friends, no they are not. Stop hanging out with them, but first consult me for a list of two words you should tell someone who says that to you.

One of my good friends has four boys. Four. While she was pregnant this last time I read an article and I don’t remember the title, but it was basically about what not to say to someone who is pregnant. One of the tips was “don’t tell a pregnant woman she looks huge or giant.” Who should you say that to? I mean seriously. I know common sense is less common now, but isn’t that pretty much a self-correcting problem? Go tell some pregnant ladies that, and let me know if you learn a lesson.

I follow a girl on Twitter with a chronic illness and her twitter name is @ivetriedaspirin. It makes me laugh every time I see it. Yes, it can be annoying to have people try to give medical advice or even encouraging ideas, but again we have to take it for the meaning behind it. The number of people who have asked if I’ve tried yoga is impressive. Here’s the thing though: they don’t mean it in any way other than trying to help out and hoping it can alleviate some of my symptoms. That’s all. I used to really enjoy yoga, but as of now, bending down is a trigger, putting my arms above my head is a trigger, and on and on. I don’t get mad or offended when people suggest it.

Now I feel inclined to make a list. 10 Ways to Interact with Amy (just in case maybe I am more than my disability or chronic health condition):

  1. Always bring her pie and coffee.
  2. Never cheer for any hockey team other than the Penguins. It makes her soul very sad if you do.
  3. It is important that your opinions be the exact same as her opinions.
  4. Be careful not to judge her intake of Taco Bell or scones, as doing so complicates her health.
  5. Feel free to make a joke about Amy passing out or another aspect of her health. Amy likes to laugh and she appreciates humor.
  6. Keep in mind that Amy is a big girl. If something upsets her or makes her mad, she will tell you.
  7. It’s OK to talk about yourself or your health in front of Amy. She cares about your well being too.
  8. If you have a question about Amy’s current abilities or limitations, the best way to know is to ask her.
  9. Feel free to tell Amy it’s not a good idea to climb a ladder; she may have forgotten.
  10. If she says she needs some water or that she is hot or nauseas, start filling buckets and prepare because stuff might be going down.

It may be easier to always find a way to be offended, but in the long run it’s much better for your health to give someone the benefit of the doubt, and keep in mind the intention behind what they voiced may have been positive.

Lead image: Thinkstock images

Follow this journey on POTS: Finding Smiles in the Trials.

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Originally published: June 25, 2016
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