Invisible Illness Awareness Week 2014

It’s Invisible Illness Awareness Week 2014 from 8-14 September. This time last year, I wrote about keeping positive. Lots has changed in a year. Anti-TNF treatment (Enbrel) has started to make a difference to my joints by stabilising my existing bone erosions and reducing swelling, stiffness and pain in my joints. But the rollercoaster nature of rheumatoid disease / arthritis means that missing most of my injections over the past month due to illness and antibiotics has reversed this progress. Once again, I’m having a nasty flare, with incredibly swollen and painful wrists. I can’t wait to restart the drug later this week and hopefully see those positive results again. I’m staying positive as much as possible but it is harder to maintain an optimistic outlook when even simple tasks like getting out of bed or the bath are a struggle. Getting back on the medication should improve my quality of life again.

The need for Invisible Illness Awareness Week remains as important as ever. Just yesterday, in a shop, I asked a member of staff about the ‘accessible’ facilities. She said casually, not even noticing my hand splints, ‘Oh, those are for disabled people’. I replied ‘I am disabled, I have rheumatoid arthritis and Ehlers-Danlos Syndrome’. She looked down at my hands, and didn’t seem either apologetic or embarrassed but reluctantly proceeded to show me to a room away from the main shop floor, only reachable by staff with a security pass. What upset me was that she had such a narrow view of disability that she hadn’t stopped to think why I was specifically asking for the ‘accessible’ facilities. Wearing splints sometimes makes people more sympathetic, but mostly elicits stares, although she didn’t even notice! Plus I shouldn’t even have to wear an obvious aid such as splints to make my invisible illnesses visible. What people with invisible illness need is greater awareness and understanding so that when we ask for specific help to make life easier, it is available and offered instinctively, no questions asked.

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4 thoughts on “Invisible Illness Awareness Week 2014

  1. It takes me weeks to get back to a “healthy” level of pain after being sick. I hope you recovery quickly.

    And, yes, people have a very narrow idea of disabilities. I need to use a cane on rare occasion and the people I work with act like I’m faking because I don’t need the cane often. It’s frustrating.

    • Sorry for the late reply and thanks for your good wishes. My joints are better at the moment but still have a horrendous level of fatigue. It’s a shame about your colleagues – as I said above, we shouldn’t have to justify to others why we’re doing certain things/using aids etc.

  2. Reblogged this on up2wellbeing and commented:
    Building awareness about RA and many other immune diseases should start with us the ones that suffer from them. I mean we have to spread the word, people will never understand what don’t know.
    Let’s keep positive, but let’s be open about the fact that people have no idea what we go through. So I am rebloging your posts and start spreading the news!

    • Sorry for the late reply. Thanks, I couldn’t agree more that spreading awareness about auto-immune diseases starts with us, that’s why I started this blog. Thank you for sharing 🙂

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