Most people just don’t get it

If you’ve been sick for an extended period of time you’ve probably encountered someone who just didn’t understand.

Receiving a diagnosis like fibromyalgia or Ehlers Danlos or dysautonomia automatically puts you in a different category than most people. Your life is a very different lived experience than most people around you. The constant doctors’ appointments, trips to the pharmacy, limited energy, struggles with sleep and constancy of pain is not the norm in society, and consequentially most people lack any common ground to be able to relate to your life.

This means that you are bound to have some awkward, painful, sometimes very hurtful conversations. The worst being with the people in your life that should with the people that you love the most.

Awkward Health Talks

I’ve been sick since I was 13 years old and I have come away from more than a few conversations with tears streaming down my face. 14 years later, my skin has become somewhat thicker when it comes to interacting with healthy people. Somewhat.

Reflecting back on some of the more interesting conversations I’ve had, I can now find some of them quite humorous, and I wanted to share my top three.

I just want to note, that the individuals described in the stories below I don’t think were malicious or intentionally unkind in saying these things to me. I believe that they just didn’t know how to relate to me and were struggling for something to say.

So without further ado, let the countdown begin!

NUMBER 3:

I was part of a small group where I was the youngest members. The group met once a week for 10 weeks and was completely unrelated to health issues. Each week, we took turns sharing our story to the group as a way to get to know each other and build relationships. Finally, my week arrived, and I detailed much of my health struggles and what I was learning in regards to understanding suffering and so on. After the group, I ended up talking to an older, retired lady who I hadn’t had much interaction with until this moment. We talked a bit about my being sick from such a young age, and then she said to me, “You’re lucky you got sick at such a young age. I’m only starting to encounter health problems now, and I don’t know how to deal with them.”

In essence, she was saying that because I was more accustomed to being sick, it wouldn’t come as such a shock when I got to her age. Yep. So lucky to be sick. That’s one way to put it…

NUMBER 2:

Over a year ago, I was volunteering at church and happened to have to stand near a woman that I knew from events but never had any real personal interactions up until this point. We spoke about her sweet child and laughed at things happening around us. It was very casual and intermittent small talk.

And then suddenly she turned to me and said, “You have fibromyalgia, right?” I replied yes, knowing how things got around in this church. “Well you know it’s not real, right?” she declared very confidently. I just stared at her feeling stunned, completely unprepared for such a barrage. “I would know, I had it,” she continued. I remained silent.

She went on to tell me that its just a diagnosis doctors use when they don’t know what’s really making you sick and you just need to be your own advocate and find out what the real problem is. The real problem was that the doctors were making something up and the ‘symptoms’ were caused by people believing them without questioning it. The solution, she told me, involved some all-natural, non-scientifically proven combination of remedies. Of course.

I just listened, my blood starting to boil. I had settled on not replying, but then I considered her saying the same thing to someone else. So I told her that my doctor was an internationally respected specialist and that fibromyalgia was, in fact, a very real condition as verified by my ten years plus of experience.

She just continued to emphasise that she was sick but was better now and that I needed to do my own research.

I politely exited the conversation as quickly as possible and haven’t seen her since.

NUMBER 1:

Several years ago, I was speaking with a lovely, young woman and we were getting to know each other. After I asked several questions about her life, it was her turn to ask me a few. It was evident that she struggled to know exactly what to ask someone who wasn’t working, in school or dating anyone. I told her a few my recent struggles and gave her a brief update on my health.

Desperate to find some common ground, she drew from her only experience with someone struggling with health problems. She very kindly said to me, “Ya, I can kinda relate to what that must be like. My grandpa is really sick, and he’s not able to get out of the house much.” 

That will always take the cake, my health situation as a 25-year-old woman (at that time) being compared to an old grandparent. Probably not that far off…. 

Laughter really is the best medicine.

In these cases, at least.

So those are my top 3. What are yours? I’d love to hear.

It’s good to look at these sort of interactions in a humorous light. We need something to laugh at.

Please share your best (or worst) stories!