SjoDry is back from the Sjogren’s Syndrome Patient Conference in Bethesda, MD. It was my first patient conference so I was not quite sure of what to expect. But I must tell you, I was very pleasantly surprised. Of course I had an expectation that I would hear doctors who specialize in treating Sjogren’s Patients and that the subject content that they were presenting promised to be very interesting (and it was). And while I did expect to see/meet other Sjogren’s Patients, I was surprised to see 400 of them.
What I did not expect was the feeling that I left the conference with. Yes, I enjoyed the conference and I really enjoyed meeting other Sjoggies there. But something far more meaningful happened to me there. After 53 years of battling an invisible illness and all of it’s many systemic manifestations in my body (that I had no name for until recently), I received validation. VALIDATION that I have not been and am not crazy, neurotic or worthy of a DSM V mental health diagnosis. I cannot tell you how reinforcing it was, when some of the presenters referenced some Sjogren’s patient’s Rheumatologists who do not have a complete understanding, nor know how to recognize Sjogren’s Syndrome in their patients. These are Rheumatologists who are well-meaning, but do not deal with Sjogren’s Syndrome enough to understand the complexities of Sjogren’s Syndrome or the specific diagnostic tools to use with their patients in attempting to identify Sjogren’s Syndrome in it’s many systemic, occular and mouth manifestations.
Like me, I know that many of you reading this, have also had negative doctor experiences in your quest for answers to the symptoms which permeate your lives. I know that those negative experiences have had a real impact on my life through the years. I know that they have also shaped my responses when searching for the right physician (or my interactions with any of my physicians for that matter). I have been careful and conditioned NOT to reveal the multiple symptomology that I experience daily or while in my appointment with the doctor(s). It didn’t start out that way. But through the years and multiple doctors, I developed a negatively reinforced fear that if I should dare mention all of my symptoms, that I will be red-flagged as neurotic, slapped with a Fibromyalgia diagnosis and invited to consider counseling. Yes, it has happened to me a number of times through the years. Sjogren’s Patients should not have to feel or be treated this way.
I think that the moment that most resonated and strengthened me at the Sjogren’s Patient Conference, was when one of the doctors speaking, gave examples and references of Sjogren’s Patients who had been invalidated by past physicians or wrongly diagnosed as neurotic. When he said that, you could hear the entire room react. It was painfully obvious that many, if not all, of those patients have shared that same type of awful experience at least once or more. And here I have felt as if I was the only one on this sick, lonely road.
53 years folks…I will NEVER question my sanity or second-guess my illness/symptoms again! And for that reason alone… the Sjogren’s Patient Conference was worth every penny.
If you have never been to the Sjogren’s Syndrome Patient Conference or are not a member of the Sjogren’s Syndrome Foundation, I would strongly urge you to join. Facing the Sjogren’s journey with other Sjoggies who understand is so valuable!