Having a Chronic Illness…

When you are dealing with chronic illness one thing is a guarantee: you will be dismissed, invalidated, and disbelieved. You will be told by people who have absolutely no business practicing medicine (the vast majority of doctors) that you are fine. That there’s nothing wrong with you. That it’s all in your head. Or that you’re just fat (the BMI chart can rot in hell) and/or depressed, and these diabetes medications (when you’re not and never have been diabetic) and antidepressants will be all you need, since you’re just fat and depressed and the diabetes meds will cause weight loss and the antidepressants will make you stop fighting for a diagnosis. I sound jaded, don’t I? I absolutely am. And have every single reason to be, and I have zero apologies about it. Here’s a little note to all but ONE doctor I’ve ever had: DO YOUR JOB.

It’s not Just the Doctors…

What’s also interesting is watching people go out of their way to dismiss what’s happening to you. Even the people who “believe” you tend to say things like “Well, you don’t even know what it is. It might just go away.” Nope, it actually won’t. And what you said wasn’t supportive or helpful, it was dismissive and hurtful. And then there are people who don’t believe you and say little nasty remarks to undermine you and your health to others. They may mock your sanity. They may roll their eyes, hinting that they think you’re making it up. That’s toxic. That’s INCREDIBLY toxic. Which means those people are toxic. Which means you should drop them like a hot potato. Because life is too short to put up with people who are bad to you. To put up with people who are toxic. To put up with people who are cruel and nasty. And it doesn’t matter if they’re family or if they’re a lifelong friend, they’re toxic and you owe it to yourself and your family to peace out from their garbage.

It Can Be Lonely…

I’ve also learned how lonely it is. You finally get a diagnosis and don’t really want to tell people because you know some will be like “Oh, no biggie! You’ve got this! This won’t slow you down!” And you know they think they’re being positive and supportive, but it really just makes you want to scream “NO! YOU HAVE NO IDEA WHAT THIS IS LIKE! My life is not what it used to be and I’m having a really hard time and I don’t want to have to deal with your feelings about it or have to pretend your over the top positivity is appreciated as to not offend you.” And then there are people who will still doubt you. Or believe your symptoms aren’t really as bad as they are. Or that you’re milking it. And then you have people you thought you’d be able to lean on in this wild time, only to have them pretty clearly put up blinders and walls. Remember that just because YOU would be supportive, doesn’t mean others will be. You will also find support in places you never expected.

But, You Can Breathe…

You also realize that you can breathe for a second. You’ve been so invalidated your entire life that you questioned yourself constantly. About everything. You knew you were sick, but part of you wondered if you somehow caused it. Or if you could push through if you just tried harder. Or if maybe it’s not as bad as you think it is. Or maybe you really are just making it all up. And now you have confirmation, and you can cut yourself a freaking break for a second. You really SHOULDN’T have been driving. You really DID need to rest more. You really CAN’T function. It’s validation to trust yourself. How sad that we have been so programmed to disbelieve our own experiences and our own bodies. Our medical industry should be absolutely ashamed. They’re not. Go to any MS or Lupus support group on FB and you’ll encounter story after story just like mine. It’s truly disgusting.

Diagnosis…

I have a diagnosis. After FINALLY getting an MRI, I learned that I have 20-30 lesions on my brain, and 6 on my cervical spine (I also have a bulging disc, which runs in my family, and I expected). I have MS. I don’t know which kind. I have the BEST doctor in the entire world, and my husband and I love him probably more than he’s comfortable with, but he’s why I have a diagnosis. And he started steroid infusions (1000mg) for three consecutive days THAT day. I’ll go back in a couple of days to see if the steroids had any impact on my cognitive symptoms (so far, no). There’s a decent chance we’ll still have to fight the neurologists on the diagnosis because for some reason doctors REALLY don’t like diagnosing things that aren’t crystal clear black and white textbook. While my lesions leave little question, we still are worried we have more fighting to do. We’ll cross that bridge when we get to it. But I really do want to know what kind of MS I have. Based on the number of lesions and the number of neurological and cognitive symptoms I have, it’s unlikely it’s RRMS, but doctors often want to diagnose that one regardless, first. So, I just have to wait and see. Which is hard for me. I want answers! I have so.many.questions.

 

I mentioned today that dealing with all of this is like trying to put together a puzzle, but all of the pieces are the same color. And there are some extra pieces, and also some pieces missing, but I’m supposed to figure it out without help. I realize that sounds dramatic, but it’s a pretty perfect analogy for the pursuit of a diagnosis with chronic illness.

Nothing I said, save about the doctors, is in regard to specific people, and I truly hope no one takes offense to the things I have said. I know it can seem harsh or ungrateful, but this is to speak to others going through the same thing, as well as give some insight to those around them, and what may be unhelpful to your friend or loved one.

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