One of the various issues I try to manage is my gut. My gastrointestinal system has been a pain in my ass (ha!) since I was young. Everything always moved too fast (medical term: hypermotile peristalsis), and the smallest change in stress, environment, or spices exacerbated that and made me flat out sick. I spent years going to doctors who told me it was all in my head. No celiac, no ulceration. Young Me tried to convince them that it was indeed entirely at the other end. Tears. Begging. Pleading. And doctors telling me it was not a functional problem, so there was nothing they could do about it. (A functional problem is one that medical tests can demonstrate. Which has always seemed odd to me, since my system was not functioning.) Referrals to psychologists for severe life-constricting diarrhea. They couldn’t figure out why the GIs were sending me to them, they sent me home.
At one point, I lost 60 pounds. I was thin, and for a fat girl, that felt awesome…except it wasn’t like I could show it off when I couldn’t leave the bathroom. Saw another doctor who wanted to do an upper GI, so I drank barium (heavy white chalky stuff that shows on the X-ray). The purpose was to take images over time, to see how it moved through my system and to get pictures of my system as it moved through. The doc told me to go sit in the waiting room, and that we would take images every 20 minutes. I tried to explain that they would be waiting too long, that we needed to shorten the timeline. The doc scoffed, silly girl, what did I know. Until I ran for the loo and they got mad that they didn’t get any pictures at all. They called it IBS-D, stated there was nothing to be done about IBS, and scooted me out the door. Irritable Bowel Syndrome, which is what doctors called anything gutwise that they couldn’t explain, and couldn’t do anything about. At the time, it was a hopeless diagnosis. Learn to live with it. Don’t eat if you want to be out and about, and God forbid you do, you’d better know where every bathroom in a five mile radius is. And I did.
Alongside some ladyproblems of terrible cramps, I finally saw doctors about that. Turns out the endometriosis was a problem for my gut, too–when the doctors finally did the hysterectomy, they fond the endometrial tissue everywhere, and had to scrape it from my instestines. Well. Crampy tissue around your digestive tract, of course that will complicate things. I was hoping that would fix everything.
Nope. Sad panda.
Things got better, things got worse, things got better, but the hypermotility didn’t go away. Certain foods were definite triggers, certain foods were sometimes triggers, and only a very specific kind of white rice felt safe (the sticky white sushi rice, not the grainy white rice, and who knew bodies could tell the difference?). I would get strict about my diet, then lazy, because it takes a lot of time and effort to be careful about food. In and out of hospitals now for colitis. Eight colonoscopies within three years. Then ulcerative colitis. Suddenly inflammation was a problem. IBS became IBD – Inflammatory Bowel Disease. It has a name! It is recognized by the doctors as a real disease! Still not much to be done about it. Foods and spices to avoid. Avoid stress.
Then the joints went out on me, and the ankylosing spondylitis and fibromyalgia diagnoses. AS is an inflammatory autoimmune disease, and likely to be tied to the inflammatory disease in my bowel. IBS and IBD are common comorbidities for fibro. (Comorbidities are other ailments commonly diagnosed along with a primary diagnosis.) Everything is connected. Light bulbs went off for the medical folks. Hooray! But now everything is getting worse. The AS is degenerative. The doctors don’t know enough about fibro to say much–they’re just getting around to recognizing it as a nerve sensitivity disorder instead of deeming it hysterical woman’s syndrome.
Prednisone, a steroid, keeps a lot of the inflammation at bay, but the side effects are crazy weight gain and messing with mood, hormones, blood sugar, and bone density. For comparison, most doctors are hesitant to use it for more than a month on normal people. I’ve been on a high dose daily since 2010. I’m on four different antispasmodics, not that you would notice. “Enough to constipate an elephant for a decade,” one of my doctors said. But if I skip them, it’s noticeable. I’m not interested in what the hypermotility looks like without the assistance. I take two weekly injections to suppress my immune system, which makes me susceptible to everything. If I get an infection and have to take antibiotics, I get C.Diff (clostridium dificile), an overgrowth of bad bacteria in the gut that is extraordinarily painful and dangerous. It is one of the secondary infections that most kills people in the hospital, particularly the very old, the very young, and the immunosuppressed. I have had it five times, and now my record has a red stripe on it that says I have a history of the infection to let the doctors know that I am highly likely to get it again.
I’m not 26 anymore, y’all. I think my body is getting tired.
Safe foods are no longer safe. Sugar and carbs and dairy and fried or high-fat seem to make everything worse. Vegetables raw or with seeds or rinds are out. Beef is out. Spices are out. Even safe foods react poorly to me moving around at all after eating, so getting home immediately kind of puts a damper on outings. Nowadays small stresses impact me hugely, so I have to manage how I engage with stress. Inflammation is the enemy: too much joint pain for too long triggers the GI system, too much GI upset and inevitably my joints will flare. Pain and the muscle tension from it exacerbate both the AS and the fibro; opioids make fibro pain worse by sensitizing the body to pain, and I avoid them because of genetic predisposition to addiction, so pain medicine is out. Tylenol is a teardrop to a sea of flame. Wearing anything that clinches in the middle (most pants, especially jeans, skirts with anything but an elastic waist) is a guaranteed GI sit-chu-ayshun, problematic since I’m an apple-shaped person and everything cinches me at the waist.
These are not necessarily complaints, these are the facts you would need to know if you were interested in how it is to live in this body.
Yoga helps, particularly with giving me tools to moderate stress and to engage with my muscles in ways that keep me mobile and keep inflammation down. The Autoimmune Protocol diet (AIP) does help, even though there are many foods even on that restricted food list that I can’t digest properly. Dresses instead of pants. Proper sleep. Mindfulness meditation, breathing exercises. Acupuncture, physical therapy. Ginger helps, and ginger kombucha is a staple in the house. Ginger candy intended to fight seasickness helps the everyday nausea. Having a sense of purpose is important because it gives me a thread to connect myself to the future on the worst days–my work connects me to wonderful people and my sense of purpose in working with people, my studies connect me mentally to engaging with the world of ideas.
(People ask me all the time why I take on additional studies. It doesn’t sap me, it energizes me. Learning reminds me that I’m alive. And yes, I could do the reading without taking an official course, but if I’m going to do the work I might as well acquire the additional qualification. I’m an academic Girl Scout. Some have supported me in this. Some have not, out of their concern about me doing too much. But it allows me to generate and bleed off a different kind of energy, and it is crucial to how I’ve built my survival tactics.)
How does this interface with mental illness? The fight against depression is real–chronic illness and pain, and the work to combat it, is exhausting. It is exhausting to know that “chronic” means you will never be cured. You can be managed. Maybe. If everything goes well. Looking into an uncertain future that is dependent on the health care situation, on the turns the disease takes, on how long medications are effective, on the coming and going of medical professionals, on certain degeneration over time is fucking terrifying. I read the stories of others who share, and shudder at how the system for disability benefits works, at watching other-mes lose family. Friends. Homes. Looking into the future on the worst days when the pain turns my vision black is impossible, so I have a litany of good things in my life I mentally recite into the darkness to keep me tethered.
It is a lot of work to be chronically ill. It’s even more work to maintain as much health as possible. A full time job, really. If you have someone in your life you are close to, ask them. Usually our immediate response is “I’m fine,” but if you are interested and tell them so, some folks will be happy to tell you the things they have to do to function. Aside from the daily things, some of the things I am embarrassed to have done include cutting my hair short because keeping my arms above my head to wash long hair was exhausting and drying the thick mass took too much energy and overheated me in the morning; replacing much of my wardrobe with dresses that may make me look pregnant but don’t squeeze my tender innards; keeping more than one large bottle of emergency Pedialyte in the fridge because when I get sick I get dehydrated easily; trading in my beloved heels for clunky orthopedic clogs because of degeneration in my hips and SI joint; keeping emergency clothes in the office in case my GI system decides to stage an epic revolt. Think about that, a grown ass woman carrying extra undies like she’s a toddler in potty training. You have to be prepared for the rough days, and take evasive maneuvers, like the hair make sure you stave off the rough days as much as you can.
There are more rough days lately, probably due to a topsy-turvy summer. I’m fucking weary.
That said, in some ways, it’s better than it was. I have great specialists who are all on the same medical record system, which is an absolute change to my universe. Both my gastroenterologist and my rheumatologist are young and still hitting the latest research reading and conferences. They are actually in the same hallway in a hospital, they have lunch together regularly. They coordinate their efforts, they know the meds I’m on, and why I’m on them. When I broke down in my rheumatologist’s office saying that I know the AS issues would improve if I could lose weight, but nothing was working, she noted that I’m on massive doses of steroids and weight loss is unlikely to happen until we can taper me down. Every time we try, the inflammation comes roaring back with a vengeance. So, good doctors. I have wildly supportive friends and family who support me from afar on Facebook and other networks, who call or message whenever. My mother who works full time to maintain her own life flew from New York to California twice, for a total of almost four weeks, this summer to help me with a disastrous move because I was physically incapable. My best friend left her husband and toddlers (yep, plural) to spend a long weekend with me to lift my spirits when I was tanking. My best friend in the opposite time zone stays up until the wee hours to call me and encourage me. My coworkers are beyond understanding, they are actively helpful and kind even when I have been inconveniently absent, or slow-moving, or a flare disrupted plans. We do wonderful things for our faculty and students, and that my team wants me with them for that means the world to me.
And so my people, real and e-, near and far, make space for me. I am still well enough to work, and because of that I have health insurance to keep me functional. I know exactly how lucky I am. Many of us spoonies (folks with chronic illness) are nowhere near so lucky. And being lucky probably makes it easier to keep my sense of humor.
I am the Poop Queen. Friends call or message when they are in GI distress. I will totally stay up and chat with you while you’re miserable on the toilet, because I understand how cold and lonely it is when you’re worried that people might find your corpse on the pot. Poop jokes are de rigeur at my place; back when I was married, we collected them to surprise each other with new jokes once in awhile–usually when I was trapped in the bathroom and we were chatting back and forth through the door. I’m pretty sure my autobiography will be titled Oh, Shit! Tales from the Queen of the Throne.
I don’t share this to be gross, though I do think the Puritanical way we treat bodytalk suppresses those of us who are chronically ill, and live lives centered on the body and its malfunctions. I share my GI issues first because sometimes it’s just fucking funny to think about a hypermotile system as the worst superpower in the world. I share them as a shout into the void to both vent my anger and to see if there’s anyone else out there who can empathize (and I’ve been lucky to live in the internet age of social networks and online groups for all sorts of identifications). I share them to let others know they’re not alone, to try to make space so that others following me can be slightly less afraid of being ‘out’ about their disability. Right now I hold some privilege, because my disability is largely invisible. I don’t always use a cane. I’m not always rocking in pain in front of my computer. I’m not always running off to the loo. Hell, a lot of my friends probably remember be being mostly-largely-sorta normal before the autoimmune stuff really hit in 2010. Will watching, or hearing about, my decline into disability make folks think twice as they engage with others who might need similar thoughtfulness, kindness? Maybe not. But it’s not in my nature to stay silent. And so.
Here we are.