“You’ve got Sjögren’s…google it”

At last an appointment with a Rheumatologist through the NHS. I have to admit I was a little scared, I knew something was wrong. The most obvious was Arthritis but that didn’t quite add up. I had come prepared I wrote a long list of everything that was wrong. On going in to my appointment I was met by a middle aged male specialist, I instantly found his manner a little abrupt. I asked if I could go through my list, as I was doing so he was tapping away on his computer putting in my symptoms. He then examined me quickly and as I already knew although I was in pain there was nothing mechanically wrong with my joints. He asked how old I was and when I said 48 his response was I think you have degeneration in your spine. I’m sure there is an element of that at my age but how does that explain the pain in the rest of my body. He then got me to stand up and then he very firmly bent me from side to side at which point I yelped, this somehow confirmed his theory on my back.

He then proceeded to look at his computer going through a list of possibilities “No its not that one, could be that” He then announced “you’ve got Sjögrens.” Id never heard of it before so I asked him what it was. He said it was an autoimmune disorder but not to worry “it’s not serious or life threatening. There is medication you can go on Hydroxychloroquine but I recommend you don’t as you will probably have more problems with the side effects.” I was completely baffled! So asked if he could explain further he tapped his watch (referring my time was up) and said “Google it!”

I did! I was horrified and felt my world was crashing down. How dare he tell me this is not serious and life changing.

I’m sure my specialist is very good and was having an off day but as I said to my Dr. “There are some jobs you are not allowed to have a bad day.” It will be no surprise to you but I refused to ever see him again.

Back to the duty Doctor for an explanation of the condition, she had clearly never heard of it before. So I came back and saw her the following day after she could discuss with another Dr. She then proceeded to tell me that my joint and muscle pain was nothing to do with Sjörgrens. Yes it is!! I will not bore you to what happened over the following week, I basically had to keep going until I got answers.

At last Dr. Wonderful, he listened whilst I cried through explaining the last few months and my frustration of feeling nobody was listening…He listened, even apologised for the fact I felt I hadn’t been heard.

He read through my notes and explained that I had Primary Sjögren’s. You can also have secondary Sjögren’s which develops of the back of other autoimmune disorders such as Lupus and Arthritis. I was a little relieved it was Primary.

I then went to see another Specialist privately….

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