The thing is – when I was at my worst points of POTS (Postural Orthostatic Tachycardia Syndrome) or NCS (Neurocardiogenic Syncope), I’d have the sensation that my body was not my own, that I had no control over it—how it acted, how it lost or gained weight, how it stayed upright, how much energy it could grant me. There were always negatives associated with this lack of control, and sometimes changes meant permanent bad change or worse symptoms to come.
And now that I’m 22 weeks pregnant, I’m feeling that same sense of “my body is not my own.”
My only history of that feeling is coupled with a chronic illness that at times took years away from my life. It’s hard not to feel panicky sometimes because of this. It’s hard not to feel a sense of dread and impending doom. It’s hard to see the impending joy that so many people keep telling me about.
Weight and body shape is one way in which I’m feeling lack of control similarities between my chronic illness and my pregnancy.
The weight that I’m putting on? Though it’s normal for a pregnant lady—it’s starting to remind me of back when I went for years undiagnosed with insulin resistance. I went for years trying to get doctors to give me the glucose tolerance test (GTT) WITH insulin measurements at each interval. Back in 2009, before my weight had gotten up to 200 lbs, I even asked a trusted doctor who I admire whether being on Metformin (a blood sugar medication) might benefit me. The conversation never really went anywhere. In 2010 (?), I tried to get the rare diseases doctor handling my case at NIH (back when I was a research patient) to run the GTT.
She refused and said I was fine blood sugar wise if my fasting blood sugar and my A1C was always normal. (Actually, this is absolutely not true for insulin resistant patients. My fasting blood sugar and A1C are usually quite normal).
Even after I got my first GTT, my general practitioner at that time didn’t read the results correctly. I needed a really great endocrinologist years later (end of 2013) to know how to give the test and how to read the results. Then, after taking my history and doing lab work, she felt that I had probably dealt with insulin resistance even as a dieting skinny teenager. People can have an underlying genetic issue that predisposes them to insulin resistance. People can even be skinny when they start out with insulin resistance. For years.
While undiagnosed I went from my lowest NCS/ POTS weight of 125 lbs up to 230 lbs before I stopped looking at the scale. And most of that weight was on my abdomen. I looked like a pregnant woman, but I didn’t have the impending joy to go with it. There were no baby kicks, there was no loving partner, there were no friendly faces. In fact I stopped going to the beach after two young men walking behind me on my way out to the sand made cracks about my weight and what a real fatty I was.
At some point between 200 – 230 lbs I took a vacation with my parents before I started my current teaching job, back in September 2013. At that point I figured I’d take a photograph of myself in a bathing suit, because I couldn’t believe how absolutely out of control my body had become. It looked foreign to me. I remember saying, “Holy shit, I look pregnant.” Only I wasn’t. I was just very improperly diagnosed at the time.
Once diagnosed, I was put on Metformin and taught about how carbohydrates and protein effected my blood sugar. I was given a Diabetes booklet on how to eat. Within three months I lost the first 40 lbs. At one point I got as skinny as 130lbs again. Just before I was pregnant I was at 149. Healthy.
On one hand I’m joyous looking at my baby bump because now it’s a bonafide baby bump. On the other hand, every time I look in that mirror I think back on that picture of me in my bathing suit from 2013 absolutely freaked out about my shape.
Let me be clear—it wasn’t just the weight itself though. It was all the health issues associated with that weight—the shortness of breath, the exhaustion, the back pain, the feeling like I had a weight belt around my stomach at all times that I wished I could just take off, the overheating because of the extra fat, the blood sugar crashes, the bouts of feeling starving and needing to eat way more than I should.
And then there’s the anger.
How many times was my insulin resistance overlooked? How many times did I ask to have that checked? How much of my career was lost because my blood sugar was so unbalanced that it would provoke my POTS and NCS symptoms? (Dysautonomia patients are actually more likely to faint due to changes in blood sugar).
The bottom line though?
Chronic illness has greatly shaped my view of pregnancy symptoms. And part of functioning day to day is working on changing my own perception of “my body is not my own” as something that has the potential to be extremely positive. It’s not easy though. The past still haunts me.