What the AS Community Means to Me
When I was first diagnosed with AS, I felt like I was drowning in terror and information overload that I’d acquired by going down the internet rabbit hole. My partner, family and friends are incredibly supportive and always ready to listen – for which I am incredibly grateful – but they didn’t live my condition; and although they would not feel this way – I felt I was burdening them.
A new body
Life changed overnight - new, strange and negative things were happening to my body, emotionally I felt in turmoil, and I had no idea what my future looked like. How did people cope? What kind of life did they lead? Could I/they lead active lives?! So I started an account on Instagram, to connect with other young people with AS, raise awareness, support and hopefully to find positive experiences of life with AS. It was eye-opening.
I realized that AS is such a broad spectrum, with people at different stages, all coping differently – although we have similar obstacles and pains, it affects us all so uniquely.
I needed to see other people being active
I desperately wanted to see other people leading full and active lives because that is such a huge part of who I am. (Dancing had been a part of my profession and I had worked hard to gain physicality back after an ACL reconstruction) Seeing other people thriving whilst navigating all the challenges that AS fireballs at you was inspiring and incredibly important for me.
It also made me want to be open, realistic, but share positive experiences too and be an encouraging voice. But in this community, I have found so much more. Between Instagram, AS.net family, and NASS, there is so much warmth, support, understanding – and resources!
The community understands
I love that people celebrate your wins with you, and commiserate on the rough times with you. They virtually wrap you in a hug, and the community understands how it feels because there are many shared obstacles and emotions. Being able to discuss your symptoms and emotions freely with people who live your condition has been liberating.
We weren’t burdening each other, we were sharing, and felt different to discussing it with my family and friends, where I wanted to protect them at times – here we just understood it, we didn’t need that particular kind of protection. (Although I will say that I think it’s important to check in with their headspace before you share – sometimes you or they may not be up for an in-depth number!)
It's a tricky time
In the past year and a half where we have been isolated from our loved ones, dealing with our conditions can be even trickier than usual and the AS community really stepped up. The kindness of strangers has been so uplifting. People have offered advice, support, checked in regularly, and when I climbed Snowdon for AS - donated to a person they’d not yet met.
I have made some very brilliant friends from the Instagram community – including my "Chronic Crew," who make me laugh (the biggest comedian is fellow HU writer James), brighten my day and make me feel as though I am in a safe space to share my joys and frustrations.
The kindness makes an impact
When I changed to Cimzia, I told my lovely friend Kirsty that I was feeling nervous about my new biologic. I made that terrible mistake of reading the side effects booklet (I know!) and the Cimzia injection is HUGE in comparison to my Benepali (Enbrel) pen. Before I could ask, she had made me a video showing me how she injected it.
When the actual crunch time came, with my husband Kev at my side – I panicked, and after a couple of failed attempts and tears, refused in toddler-tantrum style to do it. So Kev suggested I call Kirst. She calmed me down, talked me through it and when I did the jab, she was so thrilled and proud of me. These are kindnesses that make such huge impact.
Being a part of this community means that you are never alone, and there is always support – and for anyone who is affected by AS, that’s such wonderful knowledge to rest in.
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