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When Others Just Don't Understand My Reality With Dercum's Disease

“You seem to be standing without a problem,” said the box boy at the grocery store as I went from my scooter to my car.

“You are getting around pretty good,” a neighbor who never sees me stated as she saw me one time walk from my home to our car.

“You are getting off your motorized scooter faster this week,” stated a member of my health team.

“She seems OK to me,” said an extended family member who saw me less than one day during a visit.

Whether it’s a member of my extended family, neighbors, the stock boy helping me with my groceries or a member of my care team who has no professional or personal experience with what I have and is forever skeptical, it all makes my life with Dercum’s disease more complicated. No one understands what is going on with me and I am forever having to explain my every move or lack thereof. Then the question becomes, does it matter that I am able to convince any of them of my reality or not?

To understand the issues involved, you have better see the realities of the disease.

Dercum’s disease is a pain in so many ways. It’s considered one of the most painful rare diseases known. There is no way to know how many have it because the majority of doctors have zero experience. Most people have to be physically and financially able to travel quite a distance to see a
doctor with any experience, so we have no idea how many have this disorder and their doctors have not a clue.

Had it not been for a primary care doctor who had one other patient with the disorder, I would have never heard of the disorder and would have never, ever been referred to one of the few specialists in the country to find out if I had Dercum’s disease or not. So off to Ohio State University I traveled several years ago and the diagnosis was confirmed.

Think of Dercum’s disease as being similar in minor ways to fibromyalgia but with hard extremely painful lumps/nodules/lipomas that are numerous throughout one’s torso, arms and other body parts. The pain surpasses that of fibro for me. I have been diagnosed with both. In my case there isn’t an appendage or body part not impacted by the disease. Once upon a time it was just a few lumps that kept me awake at night and resided along my ribs. Those were the days I could still do some things that today are but a dream.

The disorder will get increasingly more painful as the lumps increase and grow. Get them removed and they will grow back. It is a progressive disorder. And it’s more than just pain. Your cognitive abilities can come and go with Dercum’s disease. Stress and physical exertion both will advance the disease and escalate the symptoms. There are very few treatments and none of them are 100 percent effective. The more advance the disorder, the worse it is.

When I get a day where I feel better, I instinctively but wrongly try to make hay while the sun shines. I get so excited that I feel even the slightest less pain. This has always been a mistake. The lactic acid builds up in my body and can’t be easily removed, and it makes the Dercum’s disease tumors really hurt, and the exhaustion also is unbearable.

When there is increase in pain and exhaustion, and also possibly cognitive issues and new Dercum’s tumors, we call it a flare-up. Flare-ups can vary depending on the level of advancement of the disorder. Some people are able to continue to work, and others, like myself, have had to take early retirement. My flare-ups historically have lasted anywhere from weeks to several months to how they are now, when there is very little distinction between non-flare and flare stages. My non-flare stages can be measured in hours and happen once upon a moon.

How do doctors who aren’t familiar with Dercum’s ever come to understand it? With an open mind and patients like myself having a specialist to bring their primary care doctors up to speed. To have that specialist, I am like most – I have to be well enough to travel and be able to afford the travel.

I am no longer able to easily travel by plane and the specialist I see located in the next state is leaving her practice in the next month. So here I have a disorder which those on my team have never heard of, and some need what seems to be constant convincing of what it is and isn’t. I am unable to travel as I once did to seek help. My choices are the doctor who diagnosed me and is an eight-hour one-way drive, or attempting to fly to Florida. I am unable to drive myself and I certainly can’t handle flying as I used to. It is cost prohibitive likely to take someone with me. So it is what it is.

It is what it is everywhere. When people like the stock boy who so rudely questioned my disability at the grocery when he saw me stand briefly between using the motorized cart and getting into the car, or when it’s a life and death moment that depends on me for a moment pushing myself beyond reason, or I slap a smile on my face and sit up to visit with someone when really I need to be in bed, people don’t see or understand all that is going on with my disability. They just don’t get it.

The skeptics don’t see me barely getting back into my home. They don’t see me in bed or on the sofa for day after day, week after week, month after month. They don’t see me laying in bed in too much pain to sleep and having to use one arm to carry my other arm so I can roll over. They don’t realize I cancel doctor appointments because I’m too sick to make it. They don’t see me in my wheelchair at home in the kitchen and still barely able to handle what I try to do. No one realizes that while I am sitting and talking, I am barely keeping my thoughts intact and if I were asked to pick up a head of cauliflower, I would barely be able to do so. And in writing this, it’s taken me several attempts to write small sections.

My solution has been to know that my reality is simply that – it’s the reality that is my own. I’m not going to make myself worse by stressing over who gets it and who doesn’t. All I can do is explain what I can explain. Others are going to think or not think what they want. It’s out of my hands. It’s not like Dercum’s disease is fully understood by even the medical profession in general so in all fairness I can’t expect everyone in my life to understand.

What I do expect is for people to be respectful. All of us with this disease have that right to expect that. Is it a stock boy’s place to make comments about your disability? Of course not. Is it reasonable for doctors, therapists and close family members and friends to be morally supportive and not assume if they never heard of something that it’s no cause to question the integrity of the person with it? Yes it is.

Some people I can keep at a distance. Some people I may have to remove from my circle, others I can coexist with in my life. Each person has to do what they must for their own well-being. In return, being as respectful and supportive a friend/family member/patient/client as possible is what I plan on being in return. We are all in it together.

I am so grateful for people like my husband who does the lion’s share of anything involving leaving the house, driving and cooking and all of the laundry and gets me to appointments when so many times I am unable to drive. He gets it and is there for me because of understanding my reality.

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Photo via GeorgeRudy on Getty Images