Sjogrens Awareness Month -day 11

day11 – community

Today I am going to focus on one of the more positive aspects of suffering from Sjogrens, which is the fact that you don’t have to suffer alone. The feedback I am getting from writing this month long blog is overwhelmingly people saying they are identifying with everything I am saying. It’s good to get it out there, which is why a number of us are blogging. We want to raise awareness, and to help others with Sjogrens

Even before I was diagnosed, once it had been suggested that it was probably autoimmune, I found support groups online. There was information, people ready to share their experiences, answer questions, give advice.

Then  once I knew it was Sjogrens, I found a sjogrens group. Through that I found a couple of people who lived fairly local. We started to meet from time to time, and they are both now friends of mine. When we meet its not all doom and gloom, we have a laugh. We do compare symptoms but we also discuss all the usual things women discuss, husbands, children, relationships, shopping. Thanks Sue and Maxine! X

There are differences between names of meds and social security in different countries, so two wonderful women Cara and Charlie started an English support group – Sjogrens support UK – on facebook. Its not just a condition based group. There are ongoing jokes, games, and even a naughty step!

Through this group I have made (and met) some wonderful friends. People who are there for me when I need them, and who give me the privilege of being there for them.

When I finally overcame my fear of being seen in a mobility scooter they helped plan my first shopping trip out, playing a version of  ‘I went to the market and bought’. They gave me a list of things I had to buy during that day, with photos to prove it.  It made something that had seemed daunting doable.

There is also a group called British Sjogrens on facebook, again with people willing to help.

Support is a wonderful thing. It moves you from feeling you are the only one, to knowing there are people who understand. Some of the symptoms we get are weird, and it’s easy to start thinking you are going slightly crazy. Put the symptom out there and you will find someone else who has it, had it, knows about it. Some of the meds we get prescribed are heavy duty stuff, but again just ask. Someone will have been on it at some point.

I am blessed with the most wonderful husband going. He tries so hard to understand. He deals with things I can’t cope with, helps me as much as he can. I know not everyone is that fortunate. But even he can only understand in part. It’s only those with Sjogrens who can fully understand what it is like to live with it.

Thank you to those fellow Sjoggies who walk with me along this path. X