Rolling On With HS (Part 2): Dealing With Negativity Around Your Mobility Aids
In case you missed it, check out Part 1 of this series!
Using a mobility aid for HS is probably a lot more common than you think. 1 in 5 people with HS will use a mobility aid in their lifetime, either during treatment (at a hospital or doctor's office) or permanently like me! Unfortunately, ableism exists, and not everyone will always be understanding, accepting, or kind. With HS often being an ‘invisible illness’ due to lesions being kept under wraps, many people do not understand our struggle and therefore won’t understand your choice to use a mobility aid. Guess what? IT HAS NOTHING TO DO WITH THEM. Here are some tips to help you navigate uncomfortable situations with your mobility aid.
You don't owe anyone an explanation
If a stranger asks you why you’re using a mobility aid, the first thing to do is to take a deep breath. These questions can be jarring and upsetting, but you deserve to communicate and be heard. I like to use one of the following statements: “Why do you feel entitled to my private medical information?” Turning the question back on them in a firm way points out how inappropriate the question is without having to directly say “Hey, you don’t have a right to ask me that.” Although feel free to say that too!
“I’m chronically ill and/or disabled.” If they push you with something like “Oh, but why? What happened? What is wrong with you?” circle back to response one: “Why do you feel entitled to my private medical information?”
“I don’t feel comfortable discussing my personal information with you.” This is a blunt way to let people know you aren’t going to answer them.
Remember, you do not owe anyone your medical information! Able-bodied people don’t go around asking other able-bodied people when their last pap smear or prostate exam was while waiting in line for coffee, and their curiosity about your mobility aid is just that: their own morbid curiosity. It has nothing to do with you and you do not owe them any sort of answer at all! You can even straight up ignore them if you feel safe doing so. Some people will get agitated when you refuse them this information. They will call you rude, mean, assure you they meant no harm, etc.
The important thing to remember is that impact is more important than intent. Whether they meant harm or not, it can still feel harmful being bombarded for private information and you have every right to protect yourself by refusing to entertain their curiosity.
What about family and friends?
If a loved one or friend asks why you’ve decided to start using a mobility aid, these are often people who truly ARE well-meaning and are asking out of concern. With that being said it doesn’t make you feel any more comfortable in certain situations, like when you’re seeing them for the first time in a while or they’ve decided to exclaim “Oh my gosh, what happened to you?!” loudly at a family gathering.
“I have a chronic illness and this helps with my pain.” Sweet, simple, and to the point. It gives them enough information while still maintaining your privacy.
“Can we talk about this another time? I don’t feel comfortable discussing it right now.” This lets them know that you aren’t trying to shut them out, you just don’t feel comfortable having that conversation with them right now. If they get pushy, say “I know this might be concerning to you but I promise you this is a good thing for me. It allows me the freedom of movement without pain and we can talk about it soon.” If they STILL try to push you, hit them with a calm but firm “If you care about me you will not try and force this information out of me right now.” This lets them know that they are hurting you by pushing you to talk about something you don’t feel comfortable discussing, and I’ve never had any loved one or friend push it past that point.
You have a right to privacy with hidradenitis suppurativa
Again, you do not owe ANYONE, a loved one, a stranger, or otherwise your medical information. It is yours and yours alone. Your medical information is between you and your doctor and no one else. Choosing to use a mobility aid is a big change in life, but I assure you it is a positive one! While accessibility can be tricky, the reduction in pain and friction and therefore a reduction in flares will bring you such a sense of peace it will be astounding. If you’re curious about whether or not a mobility aid is the right decision for you, talk to your medical team!
Do you already use a mobility aid? Let us know what it's been like for you in the comments.
Have you shared your HS story?