Sunday Reflections: On Doctors

Photo by Hush Naidoo Jade Photography on Unsplash

I’ve never liked going to the doctor (does anyone? Maybe there are people who are). If something is wrong or I’m in more pain than usual, I usually try to wait it out and hope it goes away. If it doesn’t, then I may finally break down and make an appointment.

Seeing a doctor when you have a disability, especially a rare one, is especially tricky. No one really understands what I have (including the neurologists on staff). I go over all of my issues and things that result from my disability, but generally that goes in one ear and out the other. I often get diagnosed based on a non-disabled scale.

I saw my doctor on Friday for some help with my ongoing back pain and other issues. Though he was very thorough, it was clear my doctor hadn’t listened to me at all about my muscular dystrophy the last time I was in. He thought I fell a lot because of my vision problems (umm, what vision problems?) and said I shouldn’t be having back pain like this at 39, to which I had to correct him and say I was a 39 year old with a disability. So my body really isn’t 39. I felt that thing that so many other disabled people feel when they go to the doctor: misunderstood and not heard. He did ask a lot of questions and I ultimately got referred to physical therapy and acupuncture which I’m thankful for. I’m skeptical about the physical therapy because I don’t know that I’m physically going to be able to do most of the things they ask, but I’ll give it a try.

The whole experience reminded me of why I generally try to avoid going to the doctor. I oftentimes don’t see the point because they won’t understand my specific disability and won’t even have the time to try anyway. I saw a neurologist once in my post-Muscular Dystrophy Association (MDA) days and his “helpful” advice was to wear basketball shoes. So I don’t even see much point in trying to get a referral to see a neurologist anymore. Going to the MDA (where I went for most of my life) is out too since that’s not covered by my insurance.

When I created my Instagram account for this Substack, I learned just how common this experience is among disabled people. I’ve had the luxury to just not go to the doctor in most cases and use the avoidance method, but a lot of people don’t have that option. They have to rely on their doctor(s) and consistent medical care. I can’t even imagine what dealing with that, and then not being taken seriously all the time, must be like.

The bottom line is, I shouldn’t have to feel like I don’t even want to go to the doctor because it’s going to be pointless anyway. None of us should. I try to take my health seriously and stay on top of things, but sometimes I wonder why I bother. It ends up being one more place where I have to justify and advocate for myself (which is utterly exhausting sometimes).

I get our medical system is a mess. Doctors and nurses are overworked and often can’t spend the time with their patients that they might want to. Everything is about time and money and bottom lines. I know all of that got worse after COVID. That being said, there’s still a long way to go in understanding us and our individual needs, and to give us the medical care and attention we deserve too.

This isn’t completely related to doctors, but is very much in alignment with how everyone can best be supportive and understanding towards those they know with disabilities. Rolling with a Life Interrupted posted a great article with a link of helpful ways to communicate and offer help (or not) to your disabled friends:

Handling Insensitive Questions About Our Disability