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How My Mother Goes Above and Beyond Helping Me With My Illnesses

For the past 14 years, I have struggled severely with anorexia nervosa. My mom has helped me in and out of treatment, hospitals, watched me at deaths door more times than I can count, and has driven me to numerous therapists, dietitians and treatment centers.

But more recently, I have learned I have multiple extremely rare chronic illnesses that makes things 100 times more difficult for both myself, my recovery, and my family and friends.

The first chronic illness I was diagnosed with five years ago was postural orthostatic tachycardia syndrome (POTS). At first, it was seen as just my eating disorder effecting my blood pressure and heart. Eventually, when I was somewhat stable in my eating disorder and my symptoms were not improving, we knew something was seriously wrong when I would pass out multiple times a day. I spent at least once a week in the ER and being admitted to the hospital. This prevented me from driving which caused me to rely on my mother for rides to numerous cardiac specialists. There went more gas money, wear and tear on her car, and it feels like more time wasted.

The next chronic illness I was diagnosed with was about two years ago. Gastroparesis. This one was also frustrating for my treatment team and family. Gastroparesis pretty much translates to paralysis of the stomach. If I try to eat food normally, my body just instantly rejects it because it sits in my stomach and goes nowhere. The only way out is up. At first, my team and mother blew it off as my “eating disorder talking.” Or that I was just trying to find an excuse to not eat. Finally after being in a treatment center in Arizona, and being compared to the other girls who could eat large meal plans and not have it come back up, we realized something again, was wrong.

Over the past two years we have gone to four different gastrointestinal doctors, my current one being about an hour away from where we live. The gas money, wear and tear on her car, and time quickly started to pile on more and more. Not only that, she now had to accept that her daughter would most likely have to have some kind of feeding tube for the rest of her life. This I can imagine is not easy for any parent to handle.

The final chronic illness I was just diagnosed with about four months ago, also a very rare illness is called Ehlers-Danlos syndrome. This
particular illness has caused my mom to spend the most gas, time, and energy for since so very few doctors even know about it. Ehlers-Danlos syndrome comes in four types. I have type four. It is a disease that effects the collagen fibers in the body and basically makes them default and not as strong as a healthy persons would be. I am prone to dislocations, subluxations and severe joint pain. In the past year and a half I have had two ankle surgeries, countless X-rays, MRIs, and other imaging done. We travel an hour and 45 minutes one way to get to my specialists. Each time we go, it seems we have more and more bad news that involves us making a trip up north sooner then we both would have expected.

Sure, my mother gets frustrated on occasion, as would anyone who has to spend hours in a car, or hours with their daughter who is so sick. And sure, she may complain once and a while, but what person wouldn’t?

But she still helps me. She still spends the money she doesn’t have on gas to get me to these appointments, and spend nights in hotels. And she gets me the help I very much need. She is always there when I wake up from surgery. She stays with me on an uncomfortable, hard, and itchy cot in the hospital because I am in so much pain I am terrified to be alone. She could more comfortable in a hotel bed or her own bed, but she would rather be there to support me.

She doesn’t have to do what she does. I am an adult, I am 24 years old. She could have given up on me the second I turned 18, or sooner in reality. This isn’t what she signed up for. As Mother’s Day approaches, I have so much to be grateful for when it comes to my mother. I want her to know how much I truly appreciate all that she does to help me find my way to a healthy life. My mother is a true superwoman.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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