When Local Doctors Refuse to Listen to the Experts Because You're Rare

On one day in 2012, it felt like the end of all my troubles as I phoned my husband to share the news. Finally, I had received a couple of diagnoses that explained my peculiar health. I learned I have Dercum’s disease, a rare condition. I also learned I had a more familiar  second diagnosis of fibromyalgia. There was so much detailed information I was bringing home from my doctor to my household. I was in the Columbus, Ohio airport, waiting for my flight back home further into the Midwest.

For me, the memory is now a blur — the flight home and everything. I remember feeling most of my troubles were over. In an ideal world, it should have been all uphill from there, but it hasn’t. I had answers. I knew what was wrong with me. Life had to get better, right?

I even went closer to the West Coast to another university’s medical center  and the diagnosis remained the same: Dercum’s disease. For me, that would certainly have to force my local doctors to recognize my medical reality. Seemed like it should be simple. Now, they could talk to the diagnosing doctors and learn how to work with me as part of my team. I never expected them to be experts on a disorder that was rare. But I did expect good attitudes and open minds. I also felt it reasonable for them to read  up on the most recent research and learn from the real experts of the diagnosis.

Who would ever think that a doctor open to learning about a patient’s rare disease from the experts would ever be hard to come by?

“Oh, right the experts!”  said the aging general practitioner about those who identified my condition.

I had heard so many good things about this older doctor before going into my initial meeting. In reality, he had one of the biggest egos I’ve ever witnessed in a human being. His behavior was terrible and extremely rude. His eyes closed a few times while he listened to me. He didn’t like me saying the doctors at the two universities were experts on what I had.

Immediately it became the local doctor’s goal to disprove the experts. He hated having other doctors tell him something he didn’t already know. His snide unprofessional comments made that clear. He even tried to say I didn’t have Dercum’s disease. It wasn’t about helping me. I even clarified on my first visit that I wasn’t seeing him with that in question. I just needed a local doctor for when I had the flu and so on.

It has been discouraging to me that in spite of the thousands of miles traveled, all the money on lodging, even staying in a homeless shelter at one point to await treatment in an out-of-state ICU, there are doctors in my hometown who refused to believe and work with much more qualified doctors.

It has also been pure drudgery to even work with the nice doctors who “get it,” but know there are no real treatments for it. I’m sure it’s hard for them too, not being able to give me answers. Some doctors want to help, but for rare conditions, there is often little they can do.

There is no treatment that makes the pain and swelling bearable. My last major treatment attempt was doing the Keto diet, a suggestion of my previous doctor. The outcome? It worsened of all Dercum’s sisease symptoms. I gained weight and my lab numbers were horrible. That diet put me on more medication than I had been on before because of its adverse effects on me personally.

First let me say there are many different ways to use food to heal. Always work with a doctor to make sure you stay on top of your blood work numbers and are eating in a healthy manner.

My body refused to eat animal products. Physically, it all was being rejected. So, I embraced what my body was telling me. I found a doctor who would support me in doing it in a healthy manner. My body wasn’t going to allow anything different. That has helped me more than anything any doctor has advised me to use to fight or treat the symptoms of Dercum’s disease.

After I saw the initial positive results, I did some research, and discovered that meat and animal products are suspected to cause inflammation in the body. Inflammation makes Dercum’s disease feel even worse, as well as causes high blood pressure, and issues with diabetes, etc.

I am the happiest right now because I am doing what is right for me and it’s helping. I’m embracing what I have the power to do for myself. It’s been many years since I felt this type of control of my life. Being nutritionally aware of the food I eat has given me hope.

So, to all those with a rare disorder –whether you’re diagnosed or undiagnosed –remember this:

1) Always bear in mind what you have control over and what you don’t. In other words, keep your expectations realistic. Remember, even doctors are human. Even with a specialist confirming a rare disease diagnosis, not all doctors are going to agree with that diagnosis. Be emotionally prepared.

2) Know yourself. Take care of yourself. Try to treat your rare condition, but remember to take care of your whole body as well. Keep a journal of the food or practices that help or hurt your physical and emotional health. Take responsibility for sharing them with your doctor and unless he or she objects, implement what works for you.

3) Find support groups online where others from around the world have similar rare conditions.

4) Remember our rare health condition(s) doesn’t define us. It’s tempting to get involved with countless Facebook groups and other online communities and live and breath our health issues. It’s comforting to get support. Just be careful and try to prevent your disability becoming your life’s only focus. It’s easier to get through the frustration when it’s not our focus 24 hours a day. While you are alive, be alive any way that is legal and safely possible.

5) As a patient, you are entitled to be treated with dignity and respect. Only work with doctors who will work with you as a member of your team. It’s OK to “fire” a doctor if they aren’t providing the care you need and living up to your reasonable expectations. Don’t put up with anything less than stellar professionalism and treating you like you matter.