Between the Flares
Today I read an article about Christina Applegate that really hit home.
She shared that her doctor told her she had been misdiagnosed with MS, after announcing her diagnosis in 2021. She talked about feeling like she was back at square one.
My heart hurt for her.
Because when you’re still sick, being told you don’t have the illness you thought you had leaves you asking, “Then what is wrong with me?”
I spent 35 years asking that question.
Over the years, I was told I had rheumatoid arthritis. I was told I had Crohn’s disease. We went back and forth, trying medications and searching for answers. None of those diagnoses explained what was happening to me.
I was born with arthrogryposis. You can see the differences in my hands. You can see my limp. So often, it felt like doctors saw those things and tried to put everything happening in my body into that same little box.
But my chronic illness needed its own explanation.
There were fevers, diarrhea, pain, and exhaustion. I knew what I was feeling. I just couldn’t tell anyone why it kept happening.
The appointment that finally changed things was one I almost didn’t go to.
There had been a question about Lyme disease, and a doctor wanted me to see an infectious disease specialist to help rule it out. By that point, I was tired. Another appointment. Another possibility. Another chance to walk away without answers.
But I went.
And she listened.
I told her my symptoms and everything I had been going through. She said, “That sounds like familial Mediterranean fever.”
My first thought was, “Oh gosh. Here we go again. Another rabbit hole.”
But she was right.
Genetic testing became part of the evaluation that finally led to my diagnoses of familial Mediterranean fever FMF and an NLRP12 related autoinflammatory condition.
My experience doesn’t always seem to match the descriptions I read. I read about attacks lasting a few days, followed by periods of feeling well. For me, there are times when symptoms seem to linger. Certain times of the year also seem harder.
After 35 years, I finally had an explanation.
That didn’t mean everything suddenly became simple. I’m still learning about what’s going on with me.
Medication has helped. Thank God, things aren’t as bad as they used to be. But I still have days when my body hurts, I feel like crap, and I’m exhausted.
This past month has been harder. I’m grateful I haven’t had the fevers I used to get, but I still haven’t felt like myself on plenty of days.
I don’t talk about my FMF as much as I talk about my arthrogryposis. Partly because it hasn’t been as severe lately. But I think there’s another reason, too.
You can see my arthrogryposis.
You can’t look at me and see how sick I feel inside.
And sometimes, even after everything I went through to get answers, I catch myself questioning my own pain.
“Am I making too much of this?”
“Am I really hurting that badly?”
“Come on, Debbie. Just push through.”
After 35 years of searching, you would think I’d never doubt myself again. But those thoughts still show up.
Some days, it feels like I’m coming down with the flu. My throat hurts. My body aches. I’m completely worn out. Then that feeling hangs around for weeks, and I’m left trying to understand my body all over again.
That’s the part of Christina’s story that hit me. Our medical stories are different, but I recognize the exhaustion of having symptoms without an explanation you can hold on to.
I know what it took for me to finally get an answer. I can only imagine how heartbreaking it would feel to have that answer taken away years later while the pain was still there.
It also made me think about everyone still waiting for their first answer.
Everyone explaining the same symptoms at another appointment. Everyone hoping this doctor will notice something the others missed. Everyone who looks okay to someone else and then goes home completely drained.
To my friends living that life: I see you. I hear you.
I know how lonely it can feel. I still have those moments, too.
But sharing my life has brought me a community I’m so thankful for. Friends who understand arthrogryposis. Friends who understand FMF. Friends with completely different conditions who understand the uncertainty, the exhaustion, and the effort it takes to get through an ordinary day.
I’m so happy we found each other.
You don’t have to explain everything perfectly here. You don’t have to pretend you feel fine.
And you don’t have to wait until someone can see your pain to deserve understanding.
XOXO,
Debbie
Leave a Reply