The Big Get Together
Article was written by: Claire Shaw, CIDP Patient and GAIN Community Member
When Rich asked me whether I wanted to say a few words today about the GBS and CIDP community, it made me wonder precisely how long I’ve been a member of the club that no one wants to be a member of. And it happens that this week, on 29th October, it was the 5th anniversary of my CIDP diagnosis. I remember I’d been in the hospital for 10 days undergoing tests. My consultant came to my bedside with another neurologist and the specialist nurse, and he delivered this diagnosis that became more obscure with every word – Chronic –got it!; Inflammatory – yup, I know what that means; Demyelinating – thank you, O’ level biology!; Polyradiculoneuropathy – hang on, what now?! They stayed and explained treatments and prognosis to me for maybe 15 minutes and then I was left on my own to process this news.
Facebook tells me that I joined the GAIN group on 29th October. So, on the same day as my diagnosis, I sought out community. I remember feeling relieved that I had a diagnosis but baffled by what it meant for me. I was effectively paralyzed from the waist down and in my arms, hands, and face & I wanted to know things like… is this normal for CIDP? Do people recover? Might I be able to walk again? If so, how long might it take? These were all questions that I could (and did) ask my neurologist, but there’s something about hearing from others who have the same illness, the same symptoms, something of the same experience that is so valuable. I distinctly remember scouring the videos that people had uploaded to the group of being able to walk out of rehab and watching them repeatedly, motivating myself.
Having these life-changing and often disabling chronic illnesses can be isolating, not only because perhaps we can’t do the things we used to, but also because sometimes people around us don’t understand them and how they affect us. There are invisible symptoms that we can only try to describe; some of us have neuropathic pain; others have brain fog; and others may experience debilitating fatigue. Our community understands these symptoms in a way that our family & friends may not, and this can help us feel understood and heard and can give a sense of validation.
We can use the community to seek and offer emotional support. The community has held me on my bleak days and celebrated every Small Victory with me, and it’s been my great pleasure to extend the same to others. We share in other ways, too, offering practical advice and resources about the various treatments, how we manage side effects, and describing coping strategies that might have worked for us.
I believe the community requires participation to function at its best. We all have different levels at which we can do this. I can’t run 10k to raise funds…. (yet)…. But I do participate in other ways. I join webinars to expand my knowledge & understanding of my condition; I participate in online discussion groups; I share my own experiences and the knowledge I’ve acquired with anyone who asks, especially when newly diagnosed; I use social media to raise awareness of these conditions and the charities and organizations that support those who have them… By using hashtags on social media, I have connected with people with CIDP globally and we share our experiences, both good & bad. These are all ways for me to be involved and to help to sustain and grow the community.
For me, this community has been such a supportive & empowering space in the last 5 years, and I am really so grateful for having such an amazing resource. I’ll finish by saying it’s so incredible to finally meet so many of you in real life here today and I want to extend my thanks to our hosts & to everyone who has contributed to making today possible.