I recently attached a photo of myself in a bikini to my foam roller vlog, so that I could have a catchy thumbnail, and so that people could see the results of doing the exercises. My intention was to show people that they could develop core muscles in less than half an hour a day in their home, and not rely on crazy CrossFit or TRX workouts, which I will never be able to do. The responses I have been getting are shocking.
“I saw a picture of you in your bikini and I thought, ‘what a bitch.’” And that was someone who likes me.
I have written this blog for about six months now, in the hopes that people know me and my struggles, without me having to constantly dwell on them. Clearly I am not doing my job if people envy anything about my body. Ehlers-Danlos Syndrome is an Invisible Illness. When you look at me, you will see a normal-looking person, and usually someone who is joking and functioning. But what’s going on beneath the surface is not normal.
I do not make enough collagen. This means that my ligaments and tendons are too stretchy, and they act like old elastics that no longer snap back. Since their job is to hold your bones in place, my bones slide around, pulling my muscles with them. Those tight, taught abs you see in the photo are because I have worked very hard to develop a strong core that can hold my spine up, but also, because my muscles go into overdrive, and they stay crunched, leading to pain and tissue damage. My spine is degenerating. I have a neck that is so straight it is bending backwards, causing near daily headaches of three different types with three different treatments.
I am on a medication to prevent migraines, killing my memory and my appetite, which is why I am too thin and not absorbing enough nutrients. I have to force myself to eat and drink some days, because low blood sugar and pressure leads to more headaches. I am currently undergoing neuro-surgical procedures to correct another type of headache. We’ll see if that works…
I also have herniated discs and a tear in my low back, which causes me a lot of pain, and has restricted many activities I love. This affects my GI and GU systems, my family Life, Hell, even my sex life, and also makes it hard for me to walk some days. I am due for more tests and possible surgery.
I feel pain, somewhere, every day, and I have since I was eight years old. A bone slides out of place, and my muscles seize in response. Tension builds up in my neck and shoulders from too much reading, writing or texting, and my muscles do not recover like other people, since they are already overworked dealing with two jobs. A flight of stairs sends my hamstrings into burning spams. My ribs pop out of place if I twist, and then my intercostals muscles spasm, and I can’t breathe. The front of my neck has trigger spots that seize up and pull my trachea out of joint so that I feel like I am choking, and I gag in response. I go to lift a grocery bag, and the weight of it pulls my wrist bones apart, or my elbow out. I slip on an icy patch on the sidewalk, and hips and ankles slide in different directions. I will suffer from that for days. I have to get an echocardiogram every five years to make sure my heart is stable. I have very low blood pressure, and I can faint if I stand up too fast. If I get cut, I need more stitches than you do and for longer, because my “velvety skin” doesn’t heal well. I bruise if you look at me. I have severe TMJ. My eye lenses are affected, and there are times when my eyes are so blurry, I can’t see a thing. And of course the headaches. Always the headaches.
I don’t share all of this with you to make you feel bad. I share it because I want you to know me. The real me. If my posting a photo of the result of years of dedication on the floor of my living room provokes a “she’s such a bitch for having that body” response, then we have not been communicating enough. That photo represents my triumph over adversity. It doesn’t come easily to me. I show up every day for the fight to stay functional. The secret to my success is that I have always known that I am a tortoise, not a hare.
This is my marathon. Won’t you cheer me on?
(Please note, I am not a medical professional. I do not diagnose or treat problems. If you have any serious medical concerns, seek the attention of a professional.)