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Why Disease Progression Can Feel Overwhelming – Even If You Were Expecting It

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A lot of articles and stories are written about our experiences as people with autoimmune diseases. I’ve written many myself. But I recently realized that not many articles have discussed the aspect of disease progression. And as all of us who are chronically ill know, our diseases can progress. But when they do, it can throw us into a complete tailspin. Here’s a summary of some of the reasons why that many of our friends and family don’t realize.

When our illness progresses, it can cause a whole new set of symptoms we are not used to.

As a person who has had my disease for 23 years, I have only experienced two major progressions. My most recent instance included a drastic increase in dry mouth, extreme hip pain and balance issues. Except I didn’t put it all together at first. You see, I have to sleep with a fan on. I need the air circulation on my face and the white noise. But it can also be drying so when my tongue started adhering to the roof of my mouth, I assumed it was that. My tongue would wake me up in the middle of the night which is when I would notice my hips. I thought I was only noticing the pain because I was awake. I figured it was because I was awake. Of course, now I wasn’t sleeping well. No sleep equals balance issues… Or so I thought. Once I realized what was going on, it became a whole new level of awesomeness. And a bunch of regular issues I had to learn to live with.

With new symptoms come new medications, and side effects.

As I already deal with pain, adjusting my meds was easy. I also own a cane and had to adjust to carrying it with me more while I got used to my new “center,” so to speak. Dry mouth, however, had never been a real problem for me. Sure, I drink around a gallon of water a day (and I carry it in my giant, yet stylish, purse) and I can now sense restrooms like Spiderman can sense danger, but the burning desert feeling was new. So with sticky tongue a thing now and drinking Biotene all day long not recommended, I really had to figure out options. There are medications for it however. And they work. Except now I get even more frequent and intense random hot flashes. It’s a coin flip really, sounding slurry and drunk or looking red and sweaty…

All this new stuff takes getting used to, which can tire us out.

Pain in general can raise blood pressure and heart rate. That in itself is stressful on the body. And most of us are in some sort of pain all the time. A progression involves an increase of our symptoms at the very least, which in turn equals an increase in the stress on our bodies until we learn how to manage those symptoms as our new norm. Think about that – our new norm. Yes, our norm is constant pain, constant stress of some sort on our body, constantly subject to change. And that’s just from the realities of our disease, not from living life or any regular sickness floating around that all of you normal people consider “feeling like death warmed over.” Y’all have no clue.

Progressions will happen, even when we take all our medicine.

This should be a no-brainer, but I’ve been asked too many times: What did I do to bring on a flare-up? (Nothing, they can come on if I lay in bed for a month – been there done that.) Why didn’t I drink more to avoid dehydration? (I did, my body shed it like a lizard.) Why don’t I just eat clean? (Or eliminate this or that or use supplements… that’s not how the immune system works.) So here’s the quick low down. Autoimmune (AI) disease means your immune system attacks you. It thinks there’s an invader, turns itself on and attacks some part of your own body. Medicine can only modify or suppress that response, not turn it off completely or reset the immune system. Not yet. Different meds affect different parts of the immune system, hopefully specific to the different diseases. No diet or supplement can modify or suppress the immune system itself. They can reduce swelling, which helps. Because this response is in the same order as an allergic reaction, it can get stronger over time. In some people this happens slowly, in others it happens much more quickly. But it happens. Meds can only slow it down.

A progression reminds us that we’re sick and ultimately there’s nothing we can do about it. And that can be terrifying.

Seriously. Imagine it. You break your leg. It’s in a cast but it heals. The cast comes off and you can walk again but it hurts. OK. You can get used to the pain. Years go by and you hardly notice the pain anymore. Then one day you wake up and take a step but it hurts 10 times worse than normal. You call the doctor and he says, “Oh yeah, I forgot to tell you. At different points in time, your leg will hurt worse for no reason at all. This will continue randomly for the rest of your life. You may or may not lose the ability to walk. We have no clue why and cannot stop it. Sorry!” Your first reaction would probably be WTF?! That is my reaction every time my illness progresses, no matter how much I understand my diagnosis. I want it to go away. Now. And when it overpowers me by getting stronger and worse, it reminds me of my mortality. That’s something no one wants to think about.

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Originally published: February 22, 2018
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