What NOT To Say To Someone With HS

Hidradenitis suppurativa is awful to live with but you know what makes living with it even worse? Constantly getting certain comments and being told unsolicited medical “advice.”

Seriously, no one wants or needs any more stress put on them. No one wants to hear unqualified opinions about a disease from people that don’t even live with it. And if you do have the disease and something helped you feel better, that’s really terrific, but just because something worked for you doesn’t mean it’ll work for everyone else.

Insensitive comments can impact us negatively

Having certain things said to you can really negatively impact your mental state and how you feel about yourself and your hidradenitis suppurativa. So here’s a list of things to NEVER SAY to someone with HS. Some of these may be a no-brainer, while others things you might not even realize are insensitive and can hurt.

Here we go:

• Change your diet and you’ll feel better.
• You are what you eat.
• You need to shower more.
• You need to change your razor blade more often.
• You’re overweight and that’s why it’s happening.
• It’s a sexual-transmitted disease.
• It’s not a real disease.
• The pharmaceutical companies are inventing new diseases so you buy their medications.
• Fix your gut health and your skin will feel better.
• You might have skin-mites.
• Try essential oils.
• You need to just relax.
• Change your diet first.
• It might be a parasite.
• Everything will be fixed if you clean out your body.
• It’s all in your gut.
• Detox and diet is the cure.
• Just calm down.
• You have parasites so eliminate the waste and toxins in your body.
• It’s your laundry detergent.
• It’s your body wash.
• It’s because of your pet.
• You’re not drinking enough water.
• You need to go in the sun more.
• You don’t clean your room/bathroom/apartment enough.
• Just try meditation.
• Do yoga.
• If you lost weight, you might feel better.
• Eliminate this, this, this, and this from your diet and you’ll feel better.
• You’re too young to take medication.
• You’re too young for surgery.
• You’re too young to live with an autoimmune disease.
• You don’t even look sick.
• But you were fine yesterday.
• Ew.
• Try a juice detox.
• Nice armpit hair.
• You can’t even (insert simple task here)?
• But you don’t even look like anything is wrong!
• Lose weight.
• When your anxiety starts, just go on Youtube and watch videos of puppies and babies. That’s what I do and I feel fine! (An actual doctor said this one to me.)

There is no 'one size fits all' rule

I’ve been told every single one of these things. Sometimes it’s easy to brush them right off, but other times, it hurts and takes a toll on my self esteem. Can you imagine saying to someone that their disease is made up? That it’s just a plot so you have to buy medication from pharmaceutical companies?

I don’t know, but as I was out of work for over 6 months and healing from multiple surgeries, I beg to differ.

HS is not one rule that fits all. It’s trial and error and what works for some may not work for others. Preaching about diet, weight loss, and giving unsolicited advice really doesn’t help, but just makes things worse.