Working the Scleroderma Puzzle

Having had symptoms of scleroderma for the past several years, and finally being diagnosed recently, I have experienced the challenge of "working the puzzle." I look at each new symptom as a piece of the big puzzle that needs to be completed. This puzzle is not just big, it is also difficult and frustrating to solve. It is one you want to scramble up and throw back into the box. It is one you wish you never looked at. It is one you want to walk away from and forget about entirely.

Being diagnosed with scleroderma is not typically a matter of yes or no, and its colors are not black and white. Scleroderma is a unique shade of grey, and yes it is an ugly and dark one. Unfortunately it is not uncommon for patients to be labeled as hypochondriacs. This is because something always seems to be wrong with them, and it is usually something new and strange. Patients appear to be fishing for something that is not there. The patients are frustrating the doctors, and the doctors are frustrating the patients. How sad for the patient who knows there is something wrong, but no one can seem to find it. Their fears and concerns are not validated.

Due to my own personal experiences, I tend to feel more for the patients than the doctors. All too often the doctors I met with did not take my concerns seriously and disregarded me completely. I want to encourage those suffering with symptoms, and suspecting scleroderma as the culprit, to keep their eye on the ball. Do not give up until you have your questions answered. As a patient, I learned that I had to be my own advocate. I had to figure out what the next step was, what made sense and ultimately what was going on. After all was said and done, I could have very accurately diagnosed myself. 

Patients, I am not encouraging you to neglect seeking medical attention or to simply diagnose yourself and call it a day. I am, however, encouraging you to be vigilant, aware and on guard. You know your body better than anyone else does, and you know when something is not right. Do not let anyone discourage you from fitting the pieces of the puzzle together when you know that you have one to solve.

Keep going until the puzzle is complete!