No matter what condition or diagnosis you might have, you have no doubt been the recipient of some eyebrow-raising comments. There are those friends or family members who are truly well-meaning, but just don’t get it. There are those folks who say they get it, but have decided you’re a hypochondriac & respond to you accordingly. And then there are those “professionals” we blindly provide our co-pays to while counting on the correct diagnoses and treatments. Inevitably, we have been on the receiving end of some..let’s not mince words…Idiot and hurtful comments. I have decided to include some of the comments that I have received, as well as some of yours. Why? Because I think that it helps others on this journey to know that we all have these negative experiences. It’s a way to vent, but it’s also a way (should this blog ever develop a physician/family/friend following) to let others know that these types of hurtful comments can shut down a patient’s efforts to get proper treatment.
With that said… I will mention one of the highly recommended Rheumatologists that I had the misfortune of seeing. As I presented all of the current symptoms I was having (including severe joint pain, headaches, the sudden loss of secretions in every oriface I have, etc), I was met with obvious skepticism in his tone, facial expression and words. As this was a teaching hospital, I spent the majority of time with two students. The above mentioned physician only came in on the last few mins. of the appointment and announced without having conducted a physical exam, that I probably had Fibromyalgia. Hmm. Okay. I asked, ” does that explain the sudden loss of secretions everywhere and rash on my legs” ? His response was that sometimes patients have the ‘perception’ of dryness. Seriously? I came very close to saying, “Gee, you can actually see the dryness in my eyes, nose & mouth if you do a physical exam. My real perception was that I had not found the doctor that would be able to help me and he was, therefore, not worthy of my time or response. He then went on to suggest that I might want to see a counselor. Patient Notes: Doctor has severe and chronic case of superior, smug, God complex. Keep searching for the “right” doctor.
Sjodry & Parched 
I had my newest Kaiser rheumatologist tell me to brush twice a day, floss and stay hydrated. Seriously. When I told him I had crushing fatigue and brain fog. Your patient notes fit perfectly! Thanks for posting this.
It is very eye-opening as a patient to hear those kinds of comments. It really underscores the importance of doing your research, so you can recognize when you have finally found the right doctor 🙂
I was sent many years ago before being diagnosed with Sjogren’s to a Rhuematologist by my then general practitioner. He took about 3 minutes with me, and said why are you here, you don’t have any symptoms of what your doctor has wrote down. He didn’t do any testing. She sent me, because I mentioned my mouth feeling so dry, and my eyes burning a lot. She also said that I kept having a high sed rate which I knew nothing about what that was then .
Ten years later under a different general practitioner I had a high sed rate, and a positive ANA. I had been having a lot of Pneumonia and other things going on. My general practitioner said I think you should see a Rhuematologist so he made an appointment for me. Little did I know it was the same one I had seen 10 years ago. He seen it was me that seen him 10 years ago, so he scheduled me right away to come in when my regular doctor said it might take a few months to get in. On my first appointment with this same Rhuematologist I was diagnosed with Sjogren’s, and Fibromyalgia. He did take many blood tests too, but just by my symptoms, and listening to me this time he knew I had Sjogren’s.
Five years later I started seeing another Rhuematologist due to insurance issues which was really a blessing, because he also after first visit diagnosed me with a very reliable blood test and my symptoms with Lupus. So I have Sjogren’s, Lupus, Fibromyalgia, and most recently Diabetes.
Susan
Wow. Sadly, Susan I hear this story repeatedly. I think that it is an unfortunate part of the patient experience way too often.
Thank you so much for sharing. I actually placed your story under our Patient Onset Stories.
Take Care.
SjoDry