My story is my lifelong battle with doctors to try to make them understand that something was wrong.
I was a champion athlete at 16; now I am nearly wheelchair bound by this cripplingly painful and disfiguring disease. From my early twenties I knew something was not right, I was putting on weight for no real reason and had a permanent ache all over my muscles, a bit like when you have the flu. As the pain became more precise, I tried to explain to doctors. But over the last 25 years I have been treated as lazy, fat, postmenopausal, neurotic, malingering, told that if I lost weight I would feel better. Nobody would believe the impossibility for me to lose weight.
Despite 26 operations to remove different growths and “lumps” as well as corrective surgery after scar tissue went bad, no doctor would believe the permanent pain I was suffering all over my body. There were only my lower legs which didn’t hurt.
18 months ago, I happened on a site about lipomas, “fatty tumours,” which I had been told was the cause of the numerous lumps which covered my body. In the literature I kept finding that these lumps did not ever hurt. But mine were so painful I could not even take a shower. I met people on this site who changed my life and pointed me in the direction of Dercum’s Disease. I knew at once that this was what I had been suffering from. I cried.
Since then, I have insisted on seeing specialists and doing certain tests and finding pain relief with a pain doctor. My life has changed although this disease has robbed me of so much. Today, I can function thanks to 24-hour pain control but it does not rid me of the pain, just makes it bearable. There is no known cure for this disease and until now, there has been so little research. The only solution is to excise the painful deposits, but unfortunately they often grow straight back.
Today, I cannot work, concentrate, walk, stand, sit down or even lie down for very long. I have to use a wheelchair because these tumours, which I have been told so often are harmless, are completely entangled in my muscles. The tumours are unbearable to the touch. I cannot hold or be held. Even my kitten of 16 weeks is too heavy to have on my thighs.
How can doctors not know of this disease discovered in 1886? Why have I been so insulted for over 25 years before finding some comprehension? Why was it strangers, not medically trained, and myself who should have to find this diagnosis? Why should this non-stop, 24-hour, seven-days-a-week pain be so ignored and refused by doctors? To add insult to injury, it would appear that the disease causes the weight problem I have been so insulted for as well. It seems that if you are an aging, obese, postmenopausal woman of little interest to our “body-beautiful” society then your pain can be ignored as much as your body.
Please do not think I am bitter because I am not. I am angry. Angry that this pain has cost me two marriages. Angry that my children have not had the mother they deserved. Angry that my grandchildren to be born will not have the grandmother they should have. I am 53, but disabled so much that I can no longer work or be of use to society. I feel that I am grieving my life which should have been but also the life I had hoped to have in the future. The psychological effects of being so insulted for so long have left scars which will never leave me. I wish I had the energy to write to all those doctors to tell them that their knowledge is lacking, but I do not.