A 26 Year Old Spoonie Shares Her Story (Part 3)

My primary doctor has referred me to a rheumatologist, who I will see in June, because my last blood test revealed a positive ANA panel. This means I likely have an autoimmune disorder, on top of everything else.

I am scared to go see this specialist, as my last rheumatologist I saw outright told me I was crazy (!), was too young to have so many problems, and that I was obviously making it all up, I was being dramatic, and it was all in my head.

It’s a tale too many chronically ill patients hear.

I’m not being dramatic; I’m being honest.

I wouldn’t be paying a medical professional to help me if I wasn’t at breaking point!

This is the biggest obstacle I’ve had in being a chronically ill person. I’m not taken seriously because a)I’m young, and b)I look 100% fine. Even those closest to me have a hard time being understanding when I say I’m too sore or too tired to participate in something. Sometimes, even just sitting down to watch a movie is too much to ask of me.

I’ve never been officially diagnosed because I cannot afford a sleep study or more specialists, but I have also had chronic fatigue since I was little.

What does chronic fatigue feel like?

It’s like being in a tiny suffocating bubble. Everything is happening around you and you want to interact, you want to speak coherently, you want to be a part of it all, but it’s all drowned out in the fog your bubble surrounds you in. Imagine walking blindfolded through the thickest fog you have ever witnessed and trying to navigate your way through it. It’s restricting and confusing; nothing seems clear. You’re living in this dream world where you know you exist, but interacting requires so much mental and physical exertion, that nothing you say or do is presented to others in the way you intended.

Chronic fatigue means never being able to communicate the way you intend, it means brain fog, forgetting people, places, faces, names, even who you are on some days. There are even days when you wake up and feel outside yourself. Living with chronic fatigue means never truly living, merely existing, every day the same battle, looking forward to going to bed and hoping that for once, you will wake up feeling refreshed, only to be let down by your own body again.

As I was describing how this feels to my best friend, he noted it seemed similar to how his depression feels: an all-consuming drain and you’re “stuck in a trap.”

I have self-trained my dog to be my at-home service dog. He’s 5 years old and a shelter rescue, but he is great at helping me up off the floor when I am foolish enough to sit there, he catches me if I start tripping up the stairs or my knees give out, and he balances me when I am walking with him. We’re working on retrieving dropped objects, but for now, I’m satisfied with what help he already provides. Few people know him as a service dog. I won’t ask him for help if most people are near us. I have to keep up my appearance of being healthy, of course. My pride seems to come first, and maybe someday I will learn to just admit when I need help. I’m too introverted to draw unwarranted attention to myself, so I will likely never train him for public access.

I have days when I push and push and push myself to keep going, just to keep up with everyone else. I pay for those days (which are most days) with large amounts of pain in the days following, but it’s the price any Spoonie pays for a day of pretended normalcy.

I will say as a Spoonie that while I hate being this way, and there isn’t a single day I don’t beg my boyfriend to build me a new body with properly working organs, joints, and everything else in between, I am still in a way thankful for being the way I am.

Being a spoonie has given me amounts of compassion and understanding for others that few people are capable of achieving.

There is something special about us Spoonies, and we should be proud of every day we don’t give up hope.

If you would like to read the beginning of this Spoonies story click here.

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1. The Zippy Zebra A 26 Year Old Spoonie Shares Her Story (Part 2) - The Zippy Zebra — November 6, 2016 @ 2:53 am

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