When I tell people I’m sick, they usually think I mean something short-term and contagious like the flu or a stomach bug. If I say I have a chronic illness, they picture conditions like IBS, a bad back, or chronic migraines.
The actual reality is all this and more. Yes, and.
I have IBS-like GI symptoms that range from mild diarrhea to agonizing intestinal pain and bloody stool. Migraines can hit me out of nowhere, obstructing my vision, garbling my speech, and sometimes lingering for more than a week. I get flu-like aches, chills, and fatigue that can last for months. Sometimes the fatigue is so intense that I can’t get out of bed, literally crawling on the floor to go to the bathroom. I get orthostatic intolerance, which means I can’t stand up without feeling like puking and/or passing out.
My connective tissues are corrupted, so all of my joints (including my spine) pop in and out of place causing pain, instability, and a heightened fight or flight response from a brain forced to be ever on alert. My mast cells, the white blood cells responsible for things like asthma and anaphylaxis, and hives, are over-active. They are triggered by things like the sun, marshmallows, and chemicals you didn’t know were in your home or workplace.
And those are just the big ones. That doesn’t include the symptoms that are too small for me to report in typical doctor visits, like the tingling, numbness, and pain in my extremities caused by neuropathy and spinal instability. Or the dry eyes and painful mouth and throat sores caused by my autoimmune comorbidity. Or the post-exertional malaise that can make it impossible to exercise.
Sometimes it boggles my mind to try to recount everything that I mean by “I’m sick.” It’s like a cartoon character I saw once as a kid. He was hit by a bus but somehow kept going. Then a fridge fell out a window and crushed him. After, he was blown up by TNT explosives. Then stung by a swarm of bees, trampled by horses, caught in a fire, and pushed off a cliff. Somehow, he kept going.
And I do. I keep going. Honestly, I’m terrified to stop. I’m terrified that our society will label me lazy or weak or a burden or unworthy. I’m worried that I will label myself these things, or my parents, or my partner. But I know that sometimes, my body knows when it’s time to stop, and I need to listen.
Ever-changing chronic illness
Another thing people don’t get about complex chronic illness is that it can be simultaneously ever-changing and numbingly constant. Having diarrhea one day isn’t a big deal. Having diarrhea for fifteen years is a nightmare. But as tough as the relentless consistency can be, I much prefer it to the fickle nature of this beast. You never really know what the day will bring. Sure, I grew accustomed over the years to intestinal pain. But would I also have a migraine? Would I have any energy or be a slug on the floor? Would I be able to eat, or would every food I tried set off my mast cells?
In Meghan O’Rourke’s incredible book The Invisible Kingdom, she uses the analogy of loss of limb. If you were to lose a leg, you would certainly face challenges, but you would wake up every day knowing that you’d need to adapt to life without a leg. With complex chronic illness, it is not this simple. Who knows which of the hundred symptoms my body will pick off the menu? Or will I be completely fine and spend the day wondering if it was all as bad as I thought because, look at me, I’m fine? There’s no way to communicate ahead of time with employers or friends. It’s hard to get them to even believe, sometimes, when each day can look so different.
Trying to get ahead of it all
In the last several years, I’ve gotten to a place where I at least know what all the options are, so when they pop up throughout the day I can say “I see you, I know what is causing you, and perhaps I have a trick that can help.” I live in fear of the days when a new symptom shows up and I have to go back to not knowing, to seeing specialists and rounds of testing and the trauma that gets dredged up.
It happened, this month. I started working full-time for the first time since my worst crash and subsequent diagnoses. I was excited – I’ve been feeling pretty stable for a year or two – but also nervous that this would cause a flare. What I didn’t expect was for it to cause a new symptom. I started feeling nauseous and bloated. Then pain in parts of my abdomen that were not my usual. Then eating became a battle and my belly swelled until I looked several months pregnant. It felt as if my stomach was paralyzed, that it simply had stopped emptying.
This is not an abstraction, but rather a very specific fear. EDS can cause gastroparesis, which is paralysis of the stomach. I’ve had a doctor suggest that some of my GI issues were intestinal paresis, but this was different. Then I started feeling dizzy and nauseous whenever on my back, something that can be caused by arterial compression conditions like MALS, another serious complication that can arise from EDS.
And thus came the panic.
It’s hard not to fear what’s ahead
Another thing about chronic illness is that it is made bearable by forming community. Sick friends are amazing and spoonie communities can be literal lifesavers. Yet being as well connected to the chronic illness community as I am also means that I know too much. I know people with my conditions who have been bed-bound for years, use feeding tubes for nutrition, and are slowly dying. I have seen the downward spiral time and again – a mast cell flare makes eating a challenge and causes worsened joint laxity and PEM, rendering exercise impossible, which then causes POTS to worsen, which increases the brain’s stress response, which worsens all symptoms and causes additional complications… it spirals on and on until you’re too unstable to even receive treatments.
I’ve seen it happen. It’s hard not to fear that I will be next. But the fear makes everything so much worse.
So, I reloaded my meditation app, got some extra babysitters, increased my therapy sessions, and tried really hard to be zen while ordering tests for MALS, gastroparesis, and other motility issues. I decided that the most likely cause was autonomic since my POTS was also out of control, so I doubled down on salt and water and exercised when I could. Things seemed to clear up a bit. I felt my stomach empty one day and was hit with a need to be in the bathroom forever, as well as a righteous hunger.
After days of eating ravenously and feeling like I was going to puke if I didn’t constantly have something in my mouth, I felt it shift again. My stomach was getting tighter, my belly was swelling, and it was getting harder and harder to get food down, despite the hunger.
I’m in the grey area. I am not so sick that I have severe gastroparesis or MALS. I can mostly get by, go to work, and be somewhat of a parent (with help). But some days it’s too much. Every time I stand up I have to choke down the vomit and will my vision and control of my limbs to return. My despair and fear creep back up. What if I can’t work? What if I’m just not cut out for having a career? Or for being a working mother? What if I have to spend another day feeling this miserable and nauseous, hungry but unable to eat? What if I’m not sick enough to test positive for the big ones like gastroparesis but too sick to be ok without treatment/intervention?
What’s next for me
What I keep reminding myself is that just as possible is the upward spiral. I’ve seen it happen – resting and self-care calm the nervous system, allowing mast cells to chill enough to tolerate a few more foods. This new nutrition (and joy!) gives enough of a boost to introduce some new movement or activity, if not exercise. This movement tightens up the joints and further soothes the nervous system… over time, each decrease in symptoms allows for new treatments, activities, and energy/emotional boosts. The dominoes fall into place until everything stabilizes.
I’ve seen it happen both ways. I feel like I’m on the brink of a spiral. I know that stress and fear can tip it downward, while rest and self-love can spin things up. It is hard, in this world, to accept that resting is the most important job sometimes. But for myself, my family, my friends, my daughter, the students I hope to teach in the future, and the adventures I hope to enjoy, I need, so desperately, to let myself rest.
And so, while I love my work here so dearly, I will be taking some time off to heal. I can’t express enough the importance of role models with chronic illness like Emily, who have openly taken this time for themselves, to help me feel powerful, rather than weak, in my decision. I am so grateful for this community and for the time I have spent with you. And I can’t wait to come back, once I have given my body time for its upward spiral.
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The post Knowing When To Take a Step Back When Living With Chronic Illness appeared first on Mighty Well.