My post yesterday about what happened in my ShopRite, a comment by a blogger friend, & discussions with my disability friends about the #SoInspired hashtag on Twitter last week brought back more memories of unwanted “assistance.”
These incidents happened when my illnesses were still invisible (for the most part). Yet it triggers feelings that are just as strong as the reaction I had to a stranger invading my space.
I have two rare diseases. Obviously, LAM wreaks the most havoc on my lungs & is my primary challenge right now & is the reason why I need a lung transplant. Yet, I grew up with Tuberous Sclerosis Complex (TSC), a genetic disorder that causes benign tumors on various organs. That is the reason I developed LAM but it’s also why I had seizures as a baby & have problems with my kidneys. That disease is also at the root of the benign tumors I have on my skin. I’ve had these oversized freckles since I was about 5 years old.
I have a classic “butterfly rash” of facial tumors called angiofibromas. They are larger than freckles, kind of red & pebbly. I also had a rough spot on the side of my face growing up for several years called a shagreen patch. As well as nodules on my forehead called forehead plaques (my hair covers most of them). While mine weren’t as prominent as some other people’s were, & I never had any facial surgeries because they weren’t overly bothersome or disfiguring, they were noticeable. I would get comments. Sometimes get teased occasionally.
When I started a drug treatment in 2009, one of the first signs I knew I was responding was that these angiofibromas actually shrunk after two days. My shagreen patch went away entirely within the first month.
I distinctly remember being insecure about this most of my life in part from having random comments from strangers like “You need to fix your face!” I built immunity eventually but I wasn’t raised that way to just blurt out comments like that to people whether I did or didn’t know them so I can’t say they didn’t bother me.
However, the most upsetting was when I was still living in New York City. I was in the city and I believe it was a weekend because I don’t remember it as going to or from work. Just coming & going. This random stranger sitting next to me asks “What’s wrong with you?”
Irritated though I was I kept my cool. I tried to combat with sense for once. I said, “Are you talking about my face? He nodded. “Well, these are actually caused by a genetic disease I was born with.”
That was my standard line. Usually it was enough to shut people up.
“Well, what’s it called?”
“I’ve never heard of that. I don’t think that’s what you have. You have psoriasis. That is easily fixable. You’ve just been misdiagnosed. Here…”. He proceeds to thrust a newspaper article into my lap then & there.
“Read this. It will help you get help.”
“Sir, with all due respect I had seizures and I have other problems. I was born with this. It’s genetic. I’ve known about it since I was three, it’s not psoriasis, but, thank you anyway.”
I looked for another seat but the bus was full. There was no escaping.
He continued to prattle on arguing about how I had been misdiagnosed. I just shut down & remained quiet & numb because I was seething. Even me not responding or engaging further didn’t stop his commentary.
At the time, I was working for Medscape, a healthcare professional site. I’ve never claimed to be a doctor. I could tell this man wasn’t either. Yet, I loved how he proceeded to impose his armchair medical opinion & diagnosis on me.
Finally, either he or I got off the bus. I was proud that I didn’t completely go off on him like I felt like doing.
This is but one example. A few months ago, I had a nice exchange with a woman who runs a great chronic illness podcast about how she was subjected to bullying by a man who claimed to be an authority in alternative medicine. He didn’t even have naturopathic credentials on his resume even. Just some kind of career in oil & gas. He was trying to strong arm her into a “consult.”
I’ve seen other such bullying at the hands of these people too. When they’re challenged they don’t back off, they resort to attacking the people who are challenging their advice with personal insults.
It’s saddening really.
It used to be someone would state they had a medical problem or disability, they could be taken at their word & left alone, maybe after answering a few awkward questions that shouldn’t have come their way in the first place.
Now, it has to be an act of verbal self defense to get left alone online or in public if you have any “difference”.
Moral of the story: Mind one’s own business. Keep the “expert” medical opinions & “news” articles under wraps. Especially if you don’t know the person from Adam.
They’ve been through enough at the hands of their disease(s). They don’t need more shit from anyone, much less any “help or advice” from (anything but) “well-meaning” strangers, especially when it’s served or framed in a disrespectful way.