Funny how two weeks can be so different.

Last week I was pretty low. In fact, I was miserable. As mentioned in previous posts, a combination of bad news medically and simply being at the end of my rope in constant pain; I had reached my limit. I isolated myself, snapped at friends and family. Nobody understood the daily struggle with no light at the end of the tunnel. I was done with people.

I started this week in a similar mood. As usual, I had set a bar that was way too high for myself. Saying I’d be back at work on Monday after a week off when clearly I was in a worse place health-wise than I was when I was first taken ill. I was depressing myself with trying to explain daily why I wouldn’t be at work or had to cancel plans I had made. I was fed up with letting people down.

Then a couple of things happened.

Firstly, I was asked by a leading UK charity to take part and share my story in a national campaign later in the year. This could include radio and TV adverts as well as social media publicity. I can’t say any more at this stage but this means a lot to me. The whole point of starting JoelvsArthritis was to share my story and try and give something back at a difficult time. So to be asked to do that on potentially a national level is something I am very excited and passionate about. Watch this space.

A thank you to my sister

Then, I had a massive jump in my Instagram followers. I’m still trying to decide on what my social media strategy should be for this blog (feedback welcome). I feel like I should have a presence on all of them but clearly some are more suited and are performing better than others. For example, Facebook has been great for sharing articles and bringing traffic to my site. Whereas, I have seen very little value from Twitter but that’s probably just me not putting enough time into it.

Anyway, I digress. It turns out that my super-sweet sister has been on some personal PR crusade for me and been getting her friends and followers to subscribe to my content. I received 50 new Instagram followers in a day and some really lovely messages of support from complete strangers!

Thank you, Waveney. x

Finally, a random email brought a grown man to tears. I won’t go into too much detail as I don’t want to embarrass them but to receive an email from somebody you have a lot of time and respect for giving praise for the work I am doing on here and encouraging me to keep it up, meant an awful lot.

As mentioned in previous posts, talking openly about my conditions is something that is really taking me out of my comfort zone. I am the type of person that would rather let people gossip and draw their own conclusions (often incorrectly) than talk about my problems. Through fear of discrimination, showing weakness, missing out on opportunities or simply worrying that it comes across as if I’m wanting sympathy. So to get any validation, positive feedback or encouragement, especially from trusted sources really motivates me to persevere with this. This little project of mine has gone from a few strangers reading it to reaching people who actually know me personally and that’s as terrifying as it is inspiring.

Why it matters

Now these random acts of kindness might sound minor to you but to a person who is in constant pain or chronically ill; who cannot seem to catch a break or find enjoyment in anything at the moment, it means everything.

Living with autoimmune disease is tiring. It’s unpredictable. It’s painful and most of all, it feels like a life sentence at times. A simple ‘you’re doing a good job’ or ‘can I help with anything’ can mean so much more than the average healthy person can probably appreciate. So next time you are with your friend or loved one who’s struggling with a long term health condition, ask them if there’s anything you can help with. Even better, remind them that they are doing well, they are noticed…they matter.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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