When I Started Taking Care of My Disease as If My Body Belonged to Someone I Loved


As children, we are taught to trust doctors and nurses. We are lead to believe they have all the answers and are able to diagnose and treat anything and everything.

Turns out, that could not be further from the truth.

I like to believe all doctors and nurses are trying their best, but all they can really do is make educated guesses, based on what they have learned and seen before. Yes, there are tests they can run that give some “concrete” evidence of what is going on in your body, but tests can be wrong, misleading or even false positives.

And once the tests come back, there are treatment options. The same medicines that will work for some people won’t work for others. Penicillin cures many people but can kill those who are allergic to it.

My point is, there are no clear-cut answers when it comes to your health. Our bodies are so complex and the interplay between the various organs, muscles, tissues, etc. is an incredibly complex dance that can all fall apart based on one wrong step.

I’ve spent the past 11 years seeing various doctors, being rushed to the emergency room, and spending night after night in the hospital. During that time, I’ve heard so many theories about what was causing my symptoms. I’ve been told I have everything from cancer to hypochondria. When a new doctor would ask for my medical history, I would sum it up as well as I could, in between vomiting and crying from pain.

See the problem?

When you are sick, you are bombarded with information and theories and questions. But all you can think about is the incredible pain you are in, which often leads to really strong pain medication. So now you are ill and drugged. Sounds like a great time to make medical decisions that can affect the rest of your life, right?

Not!

I have a childhood friend, Melissa, who had her first child four years ago. Her baby girl was born with a very serious congenital heart defect and has already undergone three open-heart surgeries. As you can imagine, her immune system is compromised and any illness could literally be life-threatening. Melissa has become such an amazing advocate for her daughter. Over the years, I have watched her basically morph into a doctor herself. She has learned everything possible about her daughter’s condition, potential treatments, likely complications — you name it, she knows it. She looked at that helpless little baby and she fought for her. She has argued with doctors about the best care, demanded new nurses when needed, and learned to observe every possible symptom in her child.

In addition to all that, she records and organizes everything. She could probably tell you how many times in the last four years her daughter has had her blood drawn. Melissa has folders and notebooks and binders and every symptom, every test, every medication, every doctor visit is recorded and filed away, ready to bring to the next appointment or emergency trip.

And you know what? Her daughter is doing freaking awesome. The doctors are blown away by how well she not just survived, but thrived. Her daughter goes to dance and swim classes, preschool, and dances and sings and twirls just like any other 4-year-old girl.

I truly believe a reason why this little girl is doing so well is the fact that she has had such an incredible advocate by her side. One day, it hit me: I need to take care of myself the way Melissa takes care of her daughter.

That idea, of caring for my own body as though it belonged to someone I loved more than anything else in the world, has been life-changing. I started collecting and keeping track of every test, doctor visit and prescription. Everything is organized chronologically in a huge binder. I started checking and recording my blood pressure and heart rate every day. I researched and read and researched some more.

I don’t have all the answers yet and I still have a long way to go on this journey towards healing that I have been on for years. But things started to improve when I started to improve how I handled doctors and ER visits. I now have a medical ID bracelet, so when I can’t talk, I can just point. I keep a doctor’s letter on me at all times and the proper procedure for care to give to any medical personnel in the ER. When a doctor wants my medical history, I have that letter and I also have every document in that binder, ready for review.

I’ve been teased about it. But every doctor is clearly pleased and impressed. You can almost see them thinking, I wish every patient did this! And the quality of care I receive has increased tremendously.

I think the doctors can tell I’m not f*cking around.

So, fellow rare disease warriors, take some time and organize a plan for the next time to you’re in the ER now, before you are in the hospital.

And remember to treat your body like it belongs to someone you love!

It will change your life.

Follow this journey on An Addison Alien.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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