Life With Chronic Illness

Some days you know before you even get out of bed that it’s going to be a hard one. Your body already feels off, it is already working against you, and you haven’t even started the day yet.

That’s what life with a chronic illness is like.

I have POTS, dysautonomia, PCOS, and I’m hypermobile. None of that is rare, but you wouldn’t know that by the way some doctors respond when you try to explain what’s going on.

The worst appointment I have ever had was after I had already been diagnosed with POTS by my cardiologist. I walked into my primary care doctor’s office expecting at least some level of support, or at the very least acknowledgment.

She didn’t believe it.

She told me she had other patients with POTS who didn’t need treatment and that it didn’t affect their lives. Like that had anything to do with mine.

Then she pushed birth control. Her reasoning was that if I really had all of these problems, the same ones she didn’t believe I had, then I shouldn’t be getting pregnant. It wasn’t based on anything personal to me. It was just a blanket response.

And then she asked my mother, after I had walked away for a blood draw, if I was faking it for attention. If you know my mother, you can probably imagine how well that accusation against me was received.  She can be ferocious, I’m not sure you know that about her. 

I will never forget that experience.  I understand now that I cannot trust every provider. 

People hear POTS and dysautonomia and think it’s just something mild. For some people it can be. For me, that’s not what it feels like living in it.

It’s nausea that shows up whenever it wants to. It’s dizziness that takes your balance without warning. It’s fatigue that doesn’t go away just because you slept.

And the hardest part is you look fine.

When it doesn’t show up clearly on a test, a lot of doctors fall back on anxiety. It’s an easy answer when they don’t have a better one.

If they can’t see it, it must not be real.

If you hear that enough, you start to question yourself. You’ve been told over and over that what you’re experiencing doesn’t line up with what they can prove. It will mess with your mind in exactly the way they intend it to.  The goal is for you to stop presenting symptoms that they cannot manage.  They want you to shut up.  It really is as simple as that. 

Meanwhile your body is still doing the same thing it’s been doing all along.

Doctors aren’t always right. In fact, in my case, they were very dismissive and very wrong for a long time.  They go with the quickest answer because they have a waiting room full of people and you’re taking up more than your 8 allotted minutes. 

Your family sees things no appointment ever will. They’ve seen you almost pass out. They’ve seen what this actually looks like.

People with chronic illness get used to functioning through things that would stop other people. They often push through today and pay dearly for it tomorrow.  We have to choose our hard.  Because it all is. 

Looking fine has never meant being fine.

If you’ve ever walked out of an appointment feeling small, I want you to hear me when I say this:

You’re paying attention to your body, and that’s not the problem. The provider who refuses to hear and believe you is the problem.  Fire them. 

Finding a doctor who listens can take time. More than it should. But they do exist.

I’m still in the middle of it myself. Still going to appointments, still figuring things out, still dealing with it day to day.

But I’m not questioning whether it’s real anymore.

And you shouldn’t either.

At the end of the day, the doctor goes home and enjoys their life and you stay in your body not getting that same enjoyment.

So don’t hand your voice over that easy. If something is wrong, keep telling them it’s wrong. Keep pushing until someone takes you seriously. It just might save your life.