I’m Not Ashamed (But I Am A Little Embarrassed)

Hi, I’m Megan, and I suffer from chronic illness, or rather, chronic illnesses, to be precise.

I’m not sure why I started this like an AA meeting. Maybe because it’s a familiar trope I can use to introduce a really uncomfortable subject? Or it could be my impulse to use humor to try to diffuse my own discomfort, which I do almost constantly.

Either way, let’s begin here:

I started having health problems when I was 21. It started with cramping, stomachaches, then the occasional bought of nausea and things escalated out of control pretty quickly from there. I moved back home to Portland from Albuquerque after being hospitalized with a horrific mystery illness (a long story for another day) and the root of my problem couldn’t be determined. The medical treatment I received while hospitalized was, to put it mildly, insufficient. Doctors only seemed interested in throwing medication at the problem, which only made me sicker.

So, I took a hiatus from school. I left behind my boyfriend Chris, my friends, my job and the life I had so meticulously created for myself to move back to a city I didn’t want to go back to. Side note: don’t say you’re never going to go back home at 17, because at some point shit’s going to hit the fan and you’re going to end up back in your childhood bedroom, drinking a beer and wondering where it all went wrong.

With the love and support of my family, Chris, (who dropped everything to move to be with me because #thatshowloveworks), the friends I had left and competent medical care I started to put the pieces of my shattered life back together.

Is that melodramatic enough?

Basically, I tried to get my shit together. I got a job, finished my degree online and after seeing a litany of specialists I was diagnosed with IBS-D, or Diarrhea predominate Irritable Bowel Syndrome.

“Wait,” You’re thinking. “All these theatrics for IBS? Isn’t that the farting disease?”

Yes! It is also the I-can’t-be-further-than-five-feet-from-a-bathroom-at-all-times disease. And the my-stomach-hurts-so-much-I-can’t-move disease. Some also know it as the why-I-am-up-retching-into-the-toilet-all-night disease, and of course as the what-the-fuck-can-I-eat-all-food-is-apparently-poison disease.

Clearly, my case is on the severe end of the spectrum.

For a few years, things got better. While I still had good and bad days, I had my symptoms relatively under control. I took on the role of breadwinner, breaking into the world of university administration while Chris (now promoted to fiancé status) finished school. And I was pretty good at it. I mean, not like amazing, but passable. I wasn’t in the city I wanted to be in and I had some physical limitations, but I was an empowered sort-of career woman with badass combat boots and I could do anything!

And then things started to go downhill again (because, of course).

After turning 24, I quickly realized that I was having trouble tolerating alcohol. Even half a beer or a few sips of wine set my stomach into a rampage. Soon enough, different foods followed until it got to the point where I didn’t even know what I could eat any more. Even after the stress of planning our wedding had faded after the big day, things only got worse. I spent most of our honeymoon hunched over in pain. The cherry on top was that my menstrual cycle was all over the place and my periods became unbearably painful.

Two months later, in December 2016 I was diagnosed with Endometriosis. Endometriosis runs in my family and in a way it was a relief to hear that what I was experiencing was not, in fact, normal.

For those unfamiliar with the condition, Endometriosis is basically a malfunction of the endometrial tissue, which lines the uterus in preparation for pregnancy. When a woman menstruates, the endometrium sloughs itself and exits the body through the vagina. In my case, the endometrium grows both in and outside of my uterus. The tissue that grows outside of my uterus has no place to go and just hardens into scar tissue in my abdomen. So basically, it means I experience even more abdominal pain. And the kicker is that Endometriosis often also has gastrointestinal symptoms, which is, you know, awesome.

From December on, my symptoms continued to worsen. I force fed myself to try to get enough nutrients but everything I put in my mouth made me feel ill. I spent hours in the bathroom either retching or having diarrhea or, on super fun occasions, both. My weight plummeted. I tried seeing a gastrointestinal dietician on top of my gastroenterologist, and went on a very restrictive diet to no avail. I drank calorie-laden Boost shakes, took vitamins and probiotics, I even tracked my calorie and protein intake to make sure I was getting enough. I tried medication after medication and nothing worked. Over the next six months I lost a total of about 20 pounds. I took intermittent leave from work, but frequently forced myself to go in anyway because we simply couldn’t afford for me not to work.

The breaking point was when I got appendicitis in April 2017 and was hospitalized (again). I had the appendix removed and after a two week leave returned to work, but the damage was done. I was so weak and my stomach was still completely out of control. I weighed a measly 95 pounds. I held on for another month, and after what was essentially an intervention held by my husband and family, I left my job.

I came home after my last day of work tired, sad and defeated. I sat on the couch, called my mom and cried. The first time my life imploded because of my health I felt like a failure, but the second time was so much worse; I was completely devastated. I had worked so hard to turn things around, but despite my best efforts (and thousands of dollars in medical bills) crashed and burned anyway. How the fuck did I get so broken?

So, now what?

I continued to see my doctors to try to reign in my symptoms. My husband and I figured out our finances and decided to move somewhere less expensive so we could subsist on his income until I get to a point where I can work again. I haven’t improved as quickly as I want, but I have improved. I’ve gained back almost 15 of the 20 pounds I lost. I still have to be really careful with what I eat, but I can eat more than just chicken and rice now. Of course, I still have a lot of bad days, but they don’t outnumber the good anymore.

Living with chronic illness is a learning curve. Things may be going a little better now, but that doesn’t mean I won’t fall down again later. In fact, I fully expect it to happen at some point. I’ve learned how to monitor my symptoms, and to an extent, control them. Plus, I always have my doctors’ numbers on hand. It’s hard; it’s patently unfair and sometimes I think about the hand I’ve been dealt and want to just stay in bed, but I get the fuck up anyway.

So what do I hope to accomplish by posting this on the Internet?

Well, obviously I would love for this to go viral, inspire millions and get a book deal, but in all reality like five people are actually going to read this, most of whom will be people I already know. Really I’ve decided that I’m not going to be ashamed anymore. I spent years hiding, downplaying and straight up lying about my conditions because I didn’t want anyone to know. Frankly, IBS and Endometriosis are gross. Really gross. A lot of times my body feels like a wasteland of bodily fluids and unexplainable noises (and farts; so many farts). Other people will probably also find my illnesses gross and uncomfortable, but they’re my illnesses, not theirs. So, I’m not going to feel ashamed anymore. I may feel embarrassed from time to time when my body does something weird, but I’ll get over it.

Whether I like it or not, this is my life. All I can do is try to make it better for myself.