Fatigue and the Fear of Being Found Out

4:03 PM


Oh, look! Is Tracy writing another blog post about being tired?

Yes. Yes I am. But I promise there's more to this one than the fact that I'm so bone-achingly exhausted lately.

This week, I decided to begin a whirlwind adventure with the health care system by posing the question: "HEY, DOCTORS. Why am I so unceasingly tired, and how are you going to fix it?"

My expectation of my care:



My reality is, well, not that. At least not yet! It's still early, so there's still time to beat a diagnosis out of me.

I started by attempting to meet with my ob/gyn. My first appointment was about two months ago or so, and I used my valuable lunch break to sit in a waiting room. I always try to be incredibly patient with doctors because I know I'm not their only patient and I'm definitely not their only patient with a chronic illness. (Hold up. Patient... patient? I GET IT.) But after sitting in an uncomfortable chair and listening to the worst soft rock imaginable for quite some time, I started to get a little restless.

Before I could get up and try to reschedule, one of the nurses came over to tell me that my ob/gyn was, at that moment, delivering a baby. UGH. BABIES. Ruining everything again! 

Of course, I didn't put up a fuss because, I mean, you can't tell that baby to hang on for a few minutes while I complain about my uterus making me sleepy. Instead, I met with another nurse to reschedule and try again, oh, maybe next week.
"So she can see you next month at 8 a.m. And that's it. Until the next month."

"Haha! Good one! No."
Yeah, uhhh there were at least three reasons that wasn't going to work for me. Which leads me to wonder if anyone out there is just a gynecologist and not dealing with babies on the side, too. If such a rare creature exists, they're apparently not in my insurance network...

Anyway, I decided that another doctor could carry the diagnosis torch, so I called up my primary care doctor. Who, by the way, is a doll and a big departure from my previous PCP who was 1) convinced I had an infection I didn't have, 2) made me get my urine tested every. single. time. I visited her, and 3) was alarmed every time my vitals ever so slightly shifted. 

My current PCP got me in pretty quickly and asked about my fatigue symptoms. Here is an overview, in case you missed my prior rantings on this topic.:
  • I've been tired for a really long time.
  • I can literally sleep anywhere, at any time, all the time.
  • I can't drive more than like a half hour to an hour without falling asleep.
  • I'm pretty sure I'm going to die because of the previous symptom.
  • I wake up in pain all over my body, and it's hard for me to even get out of bed.
  • I nap at least once a day because I can't function otherwise.
  • I can't remember anything, and my memory is usually a steel trap!
  • I don't feel rested after a full night's sleep, and it makes no difference if I wake up later/go to bed earlier, etc.
Most of these symptoms aren't new. Even before I knew I had endometriosis, I had trouble with staying awake. But in the last few months, these symptoms have worsened to a point where I finally said, "Okay. There has to be a way to fix this."

The biggest point of concern is the driving thing. I travel out of state pretty frequently and often by myself. I can usually stay awake if I have someone to talk to while I drive, but that's not always a possibility. And really, I shouldn't be falling asleep at the wheel, so...

This could be us, but a frog playing a banjo still wouldn't keep me awake.
Anyway, I was pretty convinced I had a thyroid issue or a vitamin insufficiency, the latter likely due to being vegetarian. (Oh-so noble, yet oh-so occasionally vitamin-deficient.) And a quick blood test said, "Eh, sort of. Not really."

No, my thyroid-hormone levels were fine. I could use a little more iron and vitamin D, yeah... But none of this was severe enough to explain why I was so exhausted.

And so, my PCP passed on the diagnosis torch to the second runner-up...

(I don't know what they're really called. So he will now be called Sleep Doctor.)

PSA: If you ever schedule a consultation for a sleep study, get there as early as possible. Like, pack a lunch. Reroute your mail to the doctor's office. Sell your house. You will have so. much. paperwork. beyond anything you've ever experienced. You are not prepared. You have no idea.



After I crawled from the mound of dead tree, Sleep Doctor called me in to hear a replay of my symptoms. He gave me a look that I now know as the "Pffft I don't know, but let's try this" face.

"Maybe you have narcolepsy."

(gif of me shrugging, throwing my hands out to the side and saying "Sure.")

To be honest, I'm not convinced. A good friend of mine has narcolepsy. If you're not familiar with it, basically, it means your brain can't process your sleep cycles normally. People with this condition experience excessive daytime tiredness and then sudden attacks of sleep they can't control. Sure, I have that. But I don't really have the night insomnia, sudden loss of muscle function or hallucinations that come with it.

Some people also think narcolepsy is an autoimmune disorder, which would make perfect since with endometriosis, given that you're at a higher risk for autoimmune disorders. And once you have one, you have like five.

But Sleep Doctor, who would like to diagnosis me with a sleep disorder, ordered me a sleep study. I'm currently waiting to hear back from my insurance company to find out if they'll cover this and how much it will cost to find out if this is my true self:

"I'm awaaaaaake! I'm not awake."

***

This leads to part two of my blog post: my fear of being "found out." I've tied it to this episode because I can no longer hide the fact that my illness is affecting my daily life.

Up until now, I've done a fairly good job of saving my painful flare-ups and endless symptoms for my home, my close friends and this blog. But as I begin to skip out on more and more social events, and as I schedule more doctor appointments, and now that I've had a conversation that went, "I cannot drive that far. I'm afraid I will die." there's no denying that my illness really is in it for the long-haul.

I knew that. At least, I was told that. But the more my body makes it agonizingly clear that it's not going to play nice, the more I'm terrified that people will "find me out."

What do I mean by that?

One thing I frequently hear that both comforts and makes me laugh is that I'm very "optimistic" and "brave" in the face of my condition. Although I know these people mean the best, I sometimes wonder if what they're really saying is "Wow, you manage to be so normal, despite the face that you have a chronic pain condition."

My ability to adapt and hide my illness gets me gold stars and nice words that not everyone with a chronic illness or a disability gets. The fact that I can get myself together enough to stay out late with my friends most of the time means that I'm doing something right with my condition.

But when everyone finds out that, oh shit, Tracy really is sick, then what? What will I lose? Who will I lose? That's what my fear of being "found out" is.

And what really messes with me is that these symptoms and my feelings are so inconsistent. When I can muster up enough energy and strength to make it to the gym or when I celebrate exercise as a way to manage my condition, I feel like a fraud. When I go days without leaving my house or when I choose sleep over the treadmill, I feel like a liar.

I know that both existences are my reality. But will other people understand that?


It's easy to tell me not to worry about what other people think. But it's honestly impossible, no matter how much you try to tell me that you don't care about others' opinions. I do care.

What I worry most about being "found out" is that people won't get the whole story. I'm not incapable of doing things. It's just going to take me another route to get it done. But I will get it done, perfectly and on time! I just may need to have you take the steering wheel, or I may have to sit in a chair while I cook dinner, or I may have to work from home. But I'm entirely, 100 percent capable.

It's a fear that I think everyone with a chronic illness faces. And it's one that grows every time I have to chase a diagnosis or dig around for a new treatment. And I'm so incredibly grateful for the supportive family members and friends and coworkers who have helped and understood me, every step of my disease.

But I'm always, always going to have this fear.

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1 comments

  1. Tracy I love your writing. You always make me smile.

    A lot of times doctors will tell you your thyroid is "fine" when really it's not. Do you know if they tested for thyroid antibodies? They usually don't unless you ask for it. My thyroid levels were "fine" but antibodies were high. After a thyroid ultrasound, I was diagnosed with Hashimoto's, whose companion is chronic fatigue.

    Another factor I've wondered about with my own fatigue is the Epstein Barr Virus. Have you ever had mono? I think this can flare up and cause that horrible mono fatigue. I hope that you get things figured out.

    Sending Love,
    Aubree.

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