Now that October is here, I’m ready to get over my denial that summer is over and switch to a scary Halloween theme. The first of our Hidden Disability Horrors episodes—The Sidewalk Doctor. You all know this person; the one who knows your case better after 5 minutes than you do after a lifetime in your own body.
I have a new neighbor who barraged me with questions, trying to wrap his head around the idea of a body that wears scars inside and out, and continues to feel pain years after the injury. He asked if I’d tried a type of massage therapy, and I hadn’t, but I get massage regularly and the technique isn’t that different from the one he suggested. He said, “Well, I took anatomy (he’s a student), so I know a lot about medicine.” Oh, good Lord. I’ve spent more hours in medical offices over the last 10 years than he’s spent sleeping in his young life, but he took one community college anatomy course, so of course he knows better.
Everyone with an invisible disability will cringe in recognition. We get variations of this all the time.
This is not to say there aren’t helpful givers of advice out there. I’ll always be grateful to the friends who referred me to acupuncture; that treatment was life-changing for me. But there are right and wrong ways to present unsolicited medical advice.
- First, the advisor must never presume to know more than the person they’re advising, even if the advisor is an expert. They may be expert in their field, but they’re not expert in the person they’re advising. The advisor needs to respect the advisee’s autonomy and experience with their own body.
- Sidewalk doctors often overblow the abilities of their proposed treatment. My friend recently got great results with her nighttime congestion by using a frankincense oil diffuser in her bedroom at night. That makes sense; that is within the credible range of the abilities of essential oils. Essential oils alone, however, won’t cure Parkinson’s disease. Overselling a treatment kills the advisor’s credibility.
- Just because someone’s dogmatic dietary system worked wonders for them doesn’t mean it’s right for me. I had such a terrible experience with keto in the 80s, I’ll never try it again. That doesn’t mean it won’t help my friend; it’s just not for me. Vegangelicals and paleo preachers, same thing.
We do not owe advisors a justification for not wanting to try their proposed treatment. We have the right to be “not interested.” Just because someone claims to have cured their autoimmune disease with a rare Chinese herb, doesn’t mean I have to pay $57 a gram to try it too, for a completely unrelated condition.
There is a popular meme on the internet that goes something like, “Why will you go to the pharmacy to fill a prescription without question, but if I ask you to try lavender oil, you need to read up on it?” It’s because my doctor knows me and has prescribed something that evidence-based medicine has shown to have a high probability of helping me. That’s not to say there won’t be bad side effects, or there isn’t a hidden danger in using the medicine, but based on my doctor-patient relationship, I’m going to try it. The friend with the lavender oil is hawking it for $30 an ounce; you have a right to be at least as cynical with your friend as you are with your doctor. You do have something to lose by trying it; if all of us added up how much money we’ve spent in the cycle of trial and error, we’d have enough to buy boats.
Alternative treatments are rarely covered by insurance, and many of us with hidden disabilities don’t have access to flexible spending accounts. So yes, unless my friend is paying for the lavender oil, I’m going to read up on its efficacy for my purposes.
Recently a friend of mine’s daughter went through a terrifying medical ordeal. Everything she said sounded similar to a problem I’d had while living in the same city, and my problem had been caused by high levels of chlorine in the water. The area has problems with giardia contamination and they chlorinate the water at levels far above typical city water supplies. I wanted to make sure my friend knew about this, but didn’t want to come off as a sidewalk doctor, so I told her my story and said, “I don’t know if that’s related in any way to what you and Jane are going through, but I thought you should be aware.” And I left it at that; I did not check to see if she’d followed up on what I said. It’s none of my business. I passed on potentially important information; what she does with it is up to her.
I see many social media posts where people talk about their condition and how it affects them, and they specifically ask people not to offer advice, only support. We need people to listen, not talk. We’re not asking you to cure us, that’s what our care team is for. We need our friends to be just that—friends. We need them to bear witness to what we go through, and encourage us, not fix us.
I like to research my topic online before I write my posts, to make sure I’m not saying the same thing someone else did last week. Interestingly, if you Google “sidewalk doctor,” you get a band called The Sidewalk Doctors. I’m going to go give them a listen while you tell me about the worst or most poorly delivered medical advice you ever got. (If you have another Hidden Disability Horror to suggest, please do!)