themighty logo

This Is My Rare, Hidden Disability -- Don't Google It


Not everyone wants to be 100-percent open about their “hidden” disability. If you had the option to turn invasive questions on and off, wouldn’t you?

Every day can’t be a day you toss on your “Ask Me About My Hidden Disability” t-shirt, grab your, “Hey! I Have an Illness You’ve Never Heard Of, and Want to Talk!” tote bag, and set your Facebook status to, “Let me educate you about the issues affecting my life with patience, compassion, and citations” before heading out the door.

But sometimes, you have the energy and drive to help people understand the world of differently-abled folks. And, if you’re like me, that means you have the energy to shout, “But don’t Google it!” when you’re talking about your illness.

I have pyoderma gangrenosum.

Don’t Google it.

In particular, I have peristomal pyoderma gangrenosum, a condition that causes large, painful ulcers to form around my ostomy site. Living with it is sometimes a challenge, but dealing with the pain and upkeep is nothing compared to coping with the reactions friends and family have after a quick Google image search.

Pyoderma gangrenosum has a Google image problem because the only images that come up are examples that would make a wound care/ostomy nurse blanch.

Sometimes, if someone texts me asking why they haven’t seen me for a few days, I’ll tell the truth. I’ll tell them I’ve had a flare-up of the ol’ pyoderma gangrenosum. This is usually followed by a few minutes of silence, then a panicked phone call from somebody wondering if I’m dying/in the hospital/messing with them.

This is why I’ve developed some coping mechanisms for talking about my illness without having to deal with someone else freaking out on my behalf.

Use Simple Language for Your Illness

I can explain the severity and extent my illness affects my life without having to use medical terms that send somebody off to a search engine. Instead of saying, “I have pyoderma gangrenosum” when somebody asks about my illness (and I have the energy and inclination to explain), I can say, “I have a condition that causes me a lot of pain because of skin problems.”

Sure, I want to raise awareness for what I’m going through — but it’s also not possible for me to always have that kind of energy.

Explain the Difference Between The Internet and Your Experience

When I do tell someone I have pyoderma gangrenosum, I will include the fact that if they look of any additional information, they will see worst-case moderate-to-severe examples right on the first page. I know most people want to know more so they can understand my experience better — and I also know what medical websites present isn’t the full spectrum of my experience.

Expect Curiosity, but Own Your Time

No matter what, if you have an off-the-beaten-path illness or condition with a Google search that leads to more questions than answers, you’re going to deal with curiosity. People are going to Google it. Sometimes it comes from love, and sometimes it comes from a lack of boundaries.

When faced with reactions like, “How do you live like that??” or “Oh my God, tell me all about it,” or “I am so sorry, I could never live with something that bad,” remember you own your story and your time.

Or ask them for $5 before answering. You don’t owe them anything — and after all, didn’t you tell them not to Google it?

Getty image by marzacz.