When You're Accused of 'Faking It' Because You're Rare

I have experienced mysterious illness for most of my life. I fall sick often and have had pains of one form or another since childhood. Most of the time when I was hospitalized, nothing was found because my blood work would be just teetering on the normal/abnormal edge.

I often was able to get away with being out of work while sick because I pushed myself hard and performed at a high level. However, I almost always had illnesses and have had  numerous surgeries to try and correct the issues I was having, all with limited success.

In the military, I became very sick and developed strange, painful lumps on my arms and terrible pains in my stomach, along with cognitive issues with my speech and memory. I was eventually hospitalized at sea and no one could figure out why I had low-grade fever and blood work that was just barely outside the norm in several areas.

Long story short, I ended up med-evacuated to Germany and was put into my first psychological wards. This was also my first introduction to dealing with others who assumed I was malingering — faking it, which is a devastating diagnosis when you are not faking it. In my mind, there is virtually no defense for faking an illness.

I was 21 years old and the thought of “faking it” had never entered my mind until they told me I was, and attempted to explain to me how and why I was faking being sick. I have lived most of my life with people thinking I’m a “fake.”

My health continued to deteriorate with periods of wellness followed by periods of unexplainable illness. People not believing you when you are sick is a devastating feeling when you are continuously falling ill and becoming less and less well. After being hospitalized for a week, the hospital “dumped” me back home. After experiencing so many struggles, I decided to research my symptoms.

I searched, and within a few days I had a match, so I began to study the disease I thought I had. I started to talk to my doctors about the condition as well. I quickly learned doctors think you are “crazy” if you try to help them diagnose what is wrong. You can go from doctor to doctor, getting your hopes up, only to be let down.

I began to search for support groups for my rare disease and found many people with Dercum’s disease have and are going through the same thing. They are going from doctor after doctor, and facing disrespect in ways that are hard to understand how a doctor could be so mean. I had doctors throw away the white paper I brought right in front of me. I had doctors tell me I was not a doctor, and had no business trying to suggest what was wrong with me. I had doctors immediately start asking me about psychiatrist services.

I eventually found a doctor familiar enough with Dercum’s to diagnose me. She walked in the door, touched my arm, noticed the painful lumps and said immediately that I had Dercum’s disease. I immediately began to cry. I was a grown man reduced to tears in front of a nurse and the doctor and a family member. After all these years, all the struggles, and all the times I was doubted by loved ones and sometimes even myself, finally, I had a diagnosis.

I still struggle with getting appropriate care. Last year I had a period of homelessness, because physically and mentally I can no longer work. I still have to occasionally deal with an uncaring provider and the terrible comments that simplify my disease and assume it is something I can control. It’s never easy to hear others think things could change if I was more positive, or took a walk, or any number of insensitive things people, including loved ones, say.

Though I may still struggle, I am still here. There is some part of me that will always know I was right all along. It may be nothing to celebrate, since being right means I have a progressive disease that eventually will result in the loss of my mobility, but somehow it feels like a justification after all those years.