Let’s face it, we all can’t toss on our “Ask Me About My Hidden Disability” t-shirts every day. Or carry around our “Hey! I Have An Illness You’ve Never Heard Of, Let’s Talk!” tote bags. Or post to Facebook, “Let me educate you about the rare illness affecting my life with patience, compassion, and citations” before heading out the door.
But sometimes, you’ll have the strength and drive to help others understand the world of differently-abled folks. And, if you’re like me, that means you also have the energy to shout, “But don’t Google it!” when talking about your illness.
I have pyoderma gangrenosum.
Don’t Google it.
Specifically, I have peristomal pyoderma gangrenosum, a condition that causes large, painful ulcers to form around my stoma site. The exact cause of pyoderma gangrenosum (PD) is unknown although it is suspected to be an autoimmune disease. Living with it is sometimes a challenge. But coping with the pain and upkeep is nothing compared to dealing with the reactions that 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/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, and then panic wondering if I’m 1) dying, 2) in the hospital, or 3) just messing with them.
Consequently, I’ve developed some coping mechanisms for talking about PD — without having to deal with someone else freaking out on my behalf.
Use simple language to describe illness and medical terms.
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. Rather than saying, “I have pyoderma gangrenosum” when somebody asks about the illness, instead I 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 or inclination to explain.
The difference between the internet and your experiences.
Many want to know more so they can understand my condition better. So, when I do tell someone that I have pyoderma gangrenosum, I include the fact that if they look up any additional information on the internet, they will likely see the worst-case (moderate-to-severe) examples right on the first page. Also, what medical websites present isn’t the full spectrum of my personal experience.
Expect curiosity and questions — 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 that you own your story and your time.
Or ask them for $5 before answering.
You don’t owe anyone anything. And after all, didn’t you tell them NOT to Google it?