Mind VS Body

My mind and body aren’t always on the same page. I frequently find myself in the position of wanting to go out and do something, but my body won’t let me. When I’m in an IBS or endometriosis flare, I’m very limited in what I am physically able to do. This means I get stuck at home a lot because I need to be near a bathroom or am unable to get out of bed due to intense pain. At times, this leads me to feel that there is a disconnect between my conscious and physical self, (even though I understand that they are integral to each other).

I’m very much a “Type A” personality; I like to keep busy and get bored easily. I love working, even if it’s just a dull secretarial position. I find the act of doing a job, of feeling useful, very fulfilling. Before leaving my job 10 months ago, I was the primary breadwinner – a 20-something just starting a career in higher education. It was an administrative position, nothing too exciting, but I loved working with students. I even began to think about going back to school to get my Master’s to teach adult learners. But, naturally that’s all on hold at the moment. It’s extremely difficult for me to work in a physical office right now since my symptoms are so unpredictable and debilitating, and going back to school when things are so uncertain feels like I would be setting myself up for failure. I’m trying to figure out a work around, but no solutions yet.

Even making simple plans is difficult. I might make plans to go on a hike over the weekend and get blindsided with a flare up. I have to hit the pause button on life and resign myself to a stint on the couch instead. It’s so incredibly frustrating to want to do all these things and come up against road block after road block. On the flip side, I don’t want to put myself in a position of doing too much and making myself sicker (I’ve done this before and it wasn’t worth it).

Often, I feel like my mind and body are completely separate entities constantly at war with one another. It’s difficult to explain, but I feel a sort of dissociation from my own body; that it’s not really mine and there’s been some sort of mistake. This feeling of dissociation is most powerful during an endometriosis flare. The worst symptoms take place during the first 1-3 days of my period. That may not sound like much, but these flares are literally crippling (and keep in mind that these occur in between several IBS flares a month and other endo related symptoms as well).

I experience an excruciating pain that radiates throughout my abdomen and up through my back. The pain manifests as an intense cramping punctuated with a stabbing sensation that lasts anywhere from 12 to 24 hours at a time. Medication doesn’t even touch it, so I don’t bother taking anything anymore; Ibuprofen and Tylenol mess up my stomach anyway. The pain is so intense, I can barely walk, and occasionally it even makes me vomit.

It’s during these types of episodes that my consciousness feels so detached from my physical self. I want to shed my body, much as the snake sheds its’ skin, and start fresh. My husband and I joke about the advancement of android technology; I’d totally go for a robot-body if that was an option.

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I get so frustrated with my situation at times – I control what I can, but ultimately I can’t control everything my body does. I see my doctors regularly, I exercise, I eat right, I do everything I possibly can to improve my health. But even that doesn’t diminish the sense of futility that goes along with having a chronic condition.

I started meditating about two weeks ago; I’m trying to let go of my instinct to control everything all the time (easier said than done). I think it’s helping, but it’s still too soon to tell. I’m not at all a religious person, but I’ve been re-reading some of the Buddhist texts I studied in college. The discussions of consciousness, self-reliance and detaching oneself from suffering resonate deeply and bring me comfort. I do try to be thankful for my body; I wouldn’t be here without it after all and I have had a lot of wonderful experiences in my life. Some days, it’s difficult to feel grateful for a body that causes me so much physical distress and I may always struggle with feelings of dissonance and dissociation.

It’s a process.

I do my best and keep going.

 

“Be Prepared”

I joined the Girl Scouts in first grade. A handful of girls in my class were part of a Brownie troop that met at our elementary school in Northeast Portland.

Meticulous and anal retentive since birth, I enjoyed the structured activities, progressive badge earning and, most importantly, the uniform. I selected a fine ensemble of chocolate high-waisted shorts, a blue collared shirt with floral vest and knee-high socks with coordinating blue tassels: I embodied the pinnacle of 1990s Girl Scout fashion.

I was always excited for meetings because it meant I got to wear my uniform to school since we met in the music room after classes had concluded. I felt on top of the world on those days – strutting around the playground with an unearned sense of confidence and authority, taking care not to dirty my Brownie duds.

I looked good and I knew it.

Alas, the dream didn’t last long. After the first year, one of the moms went on a power trip and instigated a hostile takeover of the troop. Scouts wasn’t fun anymore after she became troop leader; all she cared about were cookie sales and making sure her kid sold more than anyone else. And naturally all the other moms hated her. Pretty soon, we all dropped off one by one until there was no one left and the troop was disbanded. My precious uniform moved to the back of the closet and my scouting days were done for good.

I may have only been a Brownie for a year, but I never forgot the Girl Scouts’ motto: “Be Prepared”. This modicum proved instrumental when I started having health problems, particularly when I was still working. I never know when I’m going to flare up or where, so I always carry these essentials whenever I leave the house:

1. Anti-Nausea medication

2. Anti-Cramping medication (i.e. Levbid)

3. A Luna bar or a bag of Rice Chex or Pretzels

4. Maxi Pads

5. Flushable Wet Wipes (or as my husband calls them “Butt Wipes”)

6. A spare pair of underwear (mercifully, I’ve never had to use them, but I’ve had several close calls – nothing is more terrifying or humbling than knowing that as a full grown adult, there’s a real possibility of having an accident in a public place)

I never know how bad a flare might be or if it will take me by surprise, but thanks to the Girl Scouts of America I will always be prepared.

IMG_3145.pngAll the essentials, AKA, my “Go Kit”

Pretty on the Outside, Pain on the Inside

“You don’t look sick.”

People with chronic illness and pain are pretty familiar with that phrase. At one point or another someone’s probably said that to you. I get it all the time. Usually from well-meaning people who are just trying to understand my situation. But sometimes it’s an accusation. Since people can’t see physical signs of illness, they assume I’m not sick at all or that I’m just exaggerating or trying to get attention.

I can understand it from an outside perspective. To most people I look like a healthy, active 25-year-old woman. It can be difficult to understand something without visual proof. And I think, as human beings, sometimes we’re skeptical when faced with something we haven’t experienced personally.

One of the most insidious things about pain is that you can’t see it. You can see blood coming from the wound, but you can’t see the physical sensation of pain. So, with illnesses like endometriosis and IBS, it’s impossible to see from the outside how someone is feeling. They could be in immense pain, but you would never know just by looking at them.

However,  the lack of compassion gets really frustrating, because it makes me feel like I have to hide myself as I truly am in order to avoid questions, judgment or criticism.

The reason you can’t see physical signs of my illness is because I try really hard to hide them.

You can’t see how pale and sallow I am because I wear foundation anytime I leave the house.

You can’t see my under-eye bags that have formed after many sleepless nights because I have concealer on.

You can’t see how thin I am because I make sure to wear layers or looser fitting clothing to try to hide my rib cage while I try to gain back the weight I’ve lost.

When I was taking intermittent FMLA (federally-protected Family Medical Leave) most of my coworkers were pretty understanding. With the exception of my boss (who obviously needed the information to help get my leave approved), I didn’t go into much detail with them about what was happening with me. My conditions are pretty embarrassing and I didn’t feel comfortable going into specifics. Since it was a work situation, it was a weird balancing act: I wanted to give enough information so that they understood my condition was serious enough to miss work, but I also didn’t want to make it really awkward with people I had to see at the office every day.

I did have one coworker who, frankly, just didn’t get it. She was an older lady and I think she was under the impression that because I was young, I couldn’t have a serious health condition. I understand it didn’t help that I tried to downplay my symptoms at the office. I did try to explain to her a few times that because I have chronic conditions I have good and bad periods, but that ultimately they’re here to stay. And she just didn’t really seem to grasp that.

Initially when I would return to work after a flare she would ask if I was okay and seemed genuinely concerned.  However, as time went on and I missed more work, she would ask, “Well, you’re all better now, right?” and “Why hasn’t your doctor figured out how to fix this?”

I would explain (again) that I had chronic conditions; that I was trying to get things under control with multiple specialists, but it might take a while. The sicker I became and the more work I missed, the more I got the general air that she felt inconvenienced by my illness and that she didn’t necessarily believe that what I was describing was legitimate. Granted, that was my own impression but there were some passive aggressive comments and it was a little bit unsettling. I think the comment that bothered me the most was a joke she would make that the results of the 2016 election were making me sick. To be fair, the election results were stomach churning, but that wasn’t the reason why I was dealing with things like debilitating nausea. She made that joke over and over and over, usually right after I had returned to work after a flare.

I called my mom for advice. She has suffered with serious chronic illness from the time she was in her early 20s and I have benefited greatly from her experience.

She told me, “Some people just aren’t going to get it and that’s okay. “

It was such a simple statement, but it honestly took a lot of weight off my shoulders. She was right; I can talk myself blue in the face and some people aren’t going to understand what I’m going through. It’s my life, not theirs and it’s unreasonable of me to expect that everyone is going to be accommodating, because that’s not the world we live in.

So, I let it go.

The comments didn’t stop, but I stopped reacting to them and politely redirected the conversation. I was frustrated at the situation, because, comments aside, I did like her; we had always pretty much got along and shared a lot of laughs. I continued to be cordial and professional right up until my last day.

I eventually confided in another coworker about the comments. It was my last week and even though I had stopped reacting, the jokes and comments still got under my skin. She mentioned that I should’ve taken it to my boss, and maybe I should have. I’m sure a lot of people would say that the way I handled the situation was a mistake, but at that point I was so sick and I had so many other things to focus on, I just didn’t have the mental energy to deal with it. And I do think it taught me a valuable lesson: some people simply aren’t going to understand my situation and there’s nothing I can do about it.

What I can do is be more honest and straightforward about my experience. I think the most powerful tool is for more people to come forward and be open about their own chronic conditions. Sometimes I just wish we lived in a kinder world that’s more accepting of people with chronic physical and mental illness.

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.