An Important Message to Doctors Who Treat Young Patients With Chronic Illnesses

Just after the new year, my eldest came down with a cold. She tried dealing with it on her own with OTC medicine until a terrible cough ensued and I encouraged her to go stop at the clinic just to make sure it wasn’t something else. She works in a place where lots of children abound, so it’s always better to be cautious. I came home from an errand to find out she had the flu, Type A. We all were vaccinated.

But this isn’t what this post is about. It’s about what followed: the insensitivity of the doctor who treated her. Later on in the evening, she jokingly told me:

“Oh yeah, I forgot to mention. When he asked if there were other health conditions I should be concerned about, I told him about the RA and fibromyalgia.”

I turned and gave her that motherly, lifted eye brow look, half-knowing already what was coming.

“And what, did he say, pray-tell?”

“He said, ‘Who told you that?’” I audibly scoffed and continued in a flurry of excitement that is quintessential me, when I get angry.

“You should have told him ‘a fortune cookie!’ Oh no, better yet, how about Google, since we, the chronically ill are always deferring to Google and not their Holy Doctors. Trying to tell them how to do their job better.” I snorted. I think she was grateful I didn’t go with her, or possibly entertaining the idea of me going the next time for a good show.

I do not know if this doctor was male or female, young or old, but it was clear, that even being in the medical field did not save them from being prejudice of a young person with chronic illness. And it is a prejudice, though it’s not intentional. We do not often equate young people with the term “chronic.” We can reconcile that they may have acute problems, or that they may have terminal ones, but illnesses that cannot be cured and that will be a life-long issue — that will likely worsen but not kill them — is a difficult pill to swallow for anyone. It was a difficult thing for me to wrap my head around, and I was the one with the illnesses. You inherently either want a definitive outcome, for good or ill, but one that is in this gray, murky, area is a terrible one to live with. Doctors don’t even like treating it. It’s called “managing it,” which basically means keeping you as comfortable as they can until death. Sometimes this is super great for people. For others, it can be a rough journey.

This isn’t what is irksome to me. It’s the part where a doctor has the audacity to tell me or my daughter, or a stranger, “Who told you that?” As though you looked into a crystal ball for your diagnosis or are lying. Given the current climate toward those with chronic illness and chronic pain, it seems a poor choice of things to lie about. And let’s face it: if we sat down and thought about children, teens and young adults for just a moment, I think we would all agree that they would much rather be going out and doing things you do when you are that age, versus the things you have to do at lets say at my age (45) and chronically ill. This includes going to the doctor, getting ultrasounds, MRIs and blood-work, as well as endoscopies and colonoscopies…and the list just goes on. In my case, I get told time and time again, “You’re just a difficult patient, not a textbook patient.” So, when that happens, you end up costing a fortune, making someone, somewhere rich. I have no idea who anymore, but the point I am trying to make is that young people have a life (which is not to say that I don’t). They want to go to concerts and get their nails done, date and go to college and have parties, and all of that is very difficult when you are just trying to work and not fall over from exhaustion because of your chronic illness.

If you take away anything from this, right here, and you are in the medical profession: Remember these young adults are humans. They just wanted to have a “normal” life. They wanted to do everything their friends are doing on Instagram. And it can be very lonely. It can feel like you’re letting everyone down. So, don’t make it worse by dropping the insensitive, “And, who told you that nonsense.” Okay?

Life is just too fucking hard as it is. And by the looks of things, it’s not going to get any easier. There’s a time and there’s a place. Some people are truly misdiagnosed, but if you think that, wait to bring it up. When you come out hauling like a freight train, with “Who told you that?”, you undermine the relationship that the patient may have with the doctor who diagnosed them. Instantly, there is doubt, there is embarrassment or there is anger that will bring hostility and tension into the room. It’s rough being young with chronic illness. Everyone seems to doubt you.  Everyone seems to feel that “it’s all in your head.” Don’t be another one of those. Be someone different.

Follow this journey on the author’s blog.