Sjögren’s meeting sent me into meltdown

I’ve been on Hydroxychloroquine for 3 months now, clearly kicking in alongside all the other life changes i’m making.

The BSSA had a large seminar running up in London but my specialist was holding a pre meeting with BSSA before the main event. I had been invited to come along.

I was in two minds as to wether I should go, I was feeling pretty good and was concerned that if the other people in the room were not in the same positive state of mind it might bring me down.

I decided to go, I thought I would arrive just before the meeting started so I didn’t get caught up in conversation and could just listen to the facts from the speakers.

I arrived at the carpark of the hospital to make the observation that there seemed to be a lot of older people arriving, I thought surely they are not all going to the same meeting, they were. Nothing wrong with this but i suppose I was expecting everyone to be around the same age as me.

I went into the meeting and sat myself on the end of the aisle to protect myself from being sat next to someone I didn’t want to be. (I have a knack of sitting next to the person who wants to tell me there life story). All the seats were taken excelpt the one next to me. A very fragile looking lady came in and sat next to me, we introduced ourselves.

She then looked at my eyes and said”how come your eyes look so good?” And then proceeded to tell me the most awful story about hers, she then preceded to tell me everything else that was wrong, I was shocked she looked really unwell. The girl behind me, who was younger than me talked about her emergency visits to the hospital. Although she was positive in the way she spoke, I was taken aback. The meeting then started and although most of it was really informative there were a few people that showed me  how challenging this condition can be.

I did ask the question how quickly could the Hydroxychloroquine  could kick in as I was only two months in and already feeling the benefits. She said that this was possible and that the younger you are the quicker your body can respond to it, happy days! To be honest I was feeling pretty pleased with myself as to how well I was feeling. I realise now that my challenges to date have not been as great as others.

I remember looking around the room thinking, I haven’t got what you’ve got! I couldn’t get out the room quick enough when the meeting had finished.

I got home and I felt fine, I felt quite disconnected from it. It wasn’t until a few days later I had a big melt down. The reality struck home that actually I did have what they had and does this mean that this would be my future? And being fairly young (Okay i’m 48 but thats young in my eyes) would my condition really deteriorate by the time I was in my 60’s.

I cried for weeks, I felt scared, angry and depressed!

Don’t get me wrong I think these meetings are invaluable for most people but it just wasn’t for me.

It took a kind gesture to turn it around….


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