Stop Making Rules about how People can Talk to Me

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Deep Thoughts About POTS / Hockey, the Other Best Medicine / Smile Makers

I’m getting a wee bit tired of it.

I’ve now read the following:

  • Never tell someone with a disability that 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 that 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 Five Things You Can Say to Someone with a Disability
  • 15 Things Not to Say to Someone with a Chronic Illness
  • How to Interact with People Who Have Disabilities
  • 12 Things You Should Never Say to Someone with a Chronic Health Condition
  • 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 a LOT of things you can do wrong when talking to me apparently.  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 (I did that just for you dad) 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 that I’m not sick and I should get back to work because I’m obviously fine.  People spend most of their life learning that it’s rude to tell people they look like shit.  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 2 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 that 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, but I do think about the video below knowing that I would for sure follow these tips if I were to take photos of me doing yoga for my blog.


“There’s nothing more relaxing than doing yoga on a jagged rock in a dangerous location.”

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 that 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 shit might be going down.


Thanks for reading! I hope you all enjoy your day! It’s sunny here today and yes thanks for asking, the Penguins do play tonight and it’s best for my health if you cheer for them!


  1. I think I need to make a version of this for my situation. I went to a doctor recently who was so uncomfortable talking about my weight that I ended up laughing at him. I mean hysterical laughter. At the end of my laugh attack, I had to look him calmly in the eye and explain that I know I’m fat. I know you know I’m fat. It’s okay to say it. I’m working on it. If you have ideas or advice I will listen. I may or may not take it, but I’m not going to a) cry or b) yell at you. It’s okay. Your job is to give medical advice. Me losing weight will improve my health. Please do your job. Sorry, rant over. 🙂

    Liked by 1 person

  2. rasm47 says

    To be fair, I stopped making rules for you some time ago …. (you really never followed them anyway…) Very, very PROUD of you!

    Liked by 1 person

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