My Daughter’s Body Went on Strike

The brutal effects of invisible illnesses

This last year I faced something that is every parent’s nightmare. My daughter came home from college with what seemed like a stomach virus on Easter. She returned to The University of Kentucky, but never got better, in fact, continued to get worse. She made several trips to the emergency room to get hydrated and diagnosed. They did bloodwork each time and occasionally an X-ray and could not seem to find anything. Morgan did her best to maintain her 4.0 GPA and keep up with her schoolwork. All the while she knew something was not right. She began passing out frequently and throwing up. One night I received a call, and she was in the emergency room, and she said I think you need to come fast — this time it seems serious.

I arrived in record time, as any parent would after a call like that. The doctor explained to me that Morgan had an unexplained spontaneous Pneumothorax, i.e., a collapsed lung. He went on to explain that although not terribly uncommon, this can prove very serious and dangerous. They needed to monitor her for at least seven hours on oxygen. It was a long night and the start of a long series of medical testing. When she was released, her dad and I, insisted we talk with the disability office and have her take a temporary medical leave of absence. Morgan was devastated. She is Type A, to begin with, and has big plans to be a veterinarian. She did not anticipate this setback but was surrendering to the fact that her body was shutting down and she had no choice. We kept assuring her she’d get better soon.

She spent the next six months of her life basically on bedrest between doctor visits and trips to the emergency room. No way for a twenty-year-old who should be in enjoying the best years of her life to be living. She laid in bed with a large bowl next to her head to vomit in, took anti-nausea medicine several times daily tried to hold down what little bland food she could when she could and as much liquid when possible. We finally took to an all soup/liquid diet.

We tried a boutique doctor thinking his quality care might be best. But even paying top dollar we were highly insulted and accused of being bulimic because of our naturally thin bodies and because even though Morgan was so sick, she was not rapidly losing weight. I later learned how common medical gaslighting is by doctors. Never be afraid to be your own advocate and stand up for yourself or your child. Well, we fired that doctor and honestly, he should lose his license because he caused her even further mental harm for not believing her when all she wanted to do was get back to a normal life, and delaying much-needed medical testing.

“Yes, hello, I’d like a refund on my body. It’s kinda defective and really expensive.” — anyone with a chronic illness

When Your Body Quits

When your body decides it has had enough and you are just the sad soul stuck inside you are screwed. Morgan was completely defeated at this point. Her doctor did not believe in her, she missed her friends at school, and she felt physically horrible. Seeing my daughter in this state was absolutely agonizing.

Finally, we met with a gastroenterologist who not only believed in her but offered great hope and recommended a cardiologist as the next step. We spoke on the phone later and I confided that our general doctor had accused us of both being bulimic. He apologized and said he saw that unfortunately in his notes and it truly surprised him coming from that doctor but that he could tell right away looking at both Morgan’s hands and gums she was NOT Bulimic, and he would stand by our side until we found answers. I could cry I was so appreciative of his compassion. We were finally getting some much-needed answers. There is nothing worse than the unknown.

“I am constantly in pain. YES, CONSTANTANTLY. EVERY SINGLE SECOND. The pain is still there when I don’t talk about it. When I say, “I’m fine” I have a very different definition than you do. — Stronger Than POTS

Next, we went to see the Cardiologist and had an official Tilt Table Test for P.O.T S. and sure enough, she tested positive for that and Dysautonomia. She was also genetically tested and diagnosed with Ehlers-Danlos syndrome. That doctor was truly among the Angels who walk the Earth. He recommended a book to read, and I now would also highly recommend it for anyone who goes through trying to diagnose invisible illnesses. It answered a lot of great questions, and one of the reasons diseases like it are difficult to diagnose is that so many doctors are trained for one specific specialty on one body part, but dysautonomia is a nervous system dysfunction so it affects the whole body.

At one point she looked at me and said, “What is the point of me living like this?” That was soul-crushing to me. My daughter at the age of twenty was literally trapped in the non-working body of what seemed like a ninety-year-old. I would have done anything to trade spots or take that pain away from her. I knew she was literally trying her best but barely holding on.

She received a feeding tube in February 2020. Now, she is doing better. She somehow made up all her schoolwork and is on track to graduate on time.

Morgan has taught me many things that I would like to pass along such as:

• Please do not tell someone suffering that they look fantastic, it may be well-intentioned, but when the person who is ill feels bad it minimizes their feelings.
• Please do not pet service dogs when they are working they really have very serious jobs they are doing. Morgan's dog alerts her from scent before she passes out.
• Please do not take an “emotional support” dog in public unless it is truly trained because it can become a distraction and danger for trained working dogs.
• Do not glare at or judge someone who parks in handicapped parking spots just because he/she “looks” okay. You never know how they feel or what they are dealing with. They may suffer from seizures, passing out, or other issues you cannot see from the surface.

This is a reminder never to take a day for granted and certainly not to take your body for granted even when you are young. If your body goes on strike you are screwed. Your body is the temple for your soul so treat it well. Working for a Vet’s office is the highlight of my daughter’s life. She pushes herself even when she doesn't feel well. It is because it gives her purpose and makes her feel like her life is worthwhile. Having a job is a privilege to many, in fact, getting out of bed is a privilege to many. Count your blessings…

We are still seeing doctors at Cleveland Clinic as well as in Cincinnati and she is currently undergoing more testing for Gastroparesis and a couple more things I am not at liberty to disclose, the rest she was okay with me sharing.

Thank you for taking the time to read. Please take care of your bodies and minds and stay well so you can live, laugh, and love and enjoy life!