We have Miranda Hart to thank for introducing CISFA UK to Astriid. Throughout April and May 2020, Miranda committed to fundraising for both of our causes through her online shop, and made waves in the community as a result of her heartfelt advocacy. Intrigued by CISFA UK and how their wonderful work came about, we reached out and asked them to tell us all about it. So, without further ado, let me hand over to founder, Joanne Kelly…
“All things considered I was a relatively healthy human being; right up until I turned 41 years old. Starting with a crippling fatigue and pain, my health rapidly deteriorated. After multiple miss-diagnoses, hospital stays and gruelling tests, I was eventually diagnosed with chronic heart failure; a condition brought on by a late onset complication from a surgery I had as a child for transportation of the great arteries. This diagnosis was soon followed up by two more: pulmonary hypertension and fibromyalgia.”
It is often difficult to understand the relief that comes with finally being diagnosed with chronic illness, a name tag to place upon your sometimes-invisible assailant, an acknowledgment from the world that your suffering is valid. It is even more difficult to comprehend the insurmountable grief with having to mourn the person you once were or did not have the chance to become, the life you had or never got to have. A life changing or life limiting illness impacts so much more than your physical body. Jobs can suffer, relationships can suffer, your entire mental wellbeing can become at stake. Whilst the doctors around us are often outstanding in their ability to physically help and aid in the management of symptoms, the mental strain caused can be easily overlooked.
Starting out as a simple public Facebook page, that is still going today, Chronic Illness Support for All UK (CISFA-UK) was born. Still in its embryo stage, the page was designed to help create a community for people to share their struggles with chronic illness, a safe place to be truly heard. It became increasingly apparent over time that despite a vast range of personalities and conditions, the mental impacts were often the same: Isolation, fatigue, exasperation.
A more coherent group was then created to give some more in-depth support, along with the creation of care packs. A nomination scheme to send out boxes crammed with various goodies that all chronic warriors would appreciate when the going gets extra tough; each individually packed whilst sat at the kitchen table with shoeboxes and tape at hand. As with all things over time CISFA-UK evolved, becoming a fully-fledged non-profit organisation dedicated to supporting adults and teens living with chronic illness. Making life-long friends on the way, our team may have grown but we are people who are all chronically ill ourselves, able to genuinely understand and identify with the struggles that you overcome on a daily basis.
We now run weekly support groups online and in person (both in cafés and more formal settings to provide the right environment for everyone to feel comfortable). We have our care packs and a fledgling buddy system; even during Covid-19 we are providing virtual support groups and phone buddy systems so no one must feel alone.
We also host wellness days – a full day of pampering, talks, demonstrations and of course good food and company!
Our goal is to continue to grow in an authentic way, reaching more people who need a support system like ours. We wish to organise support groups up and down the country and eventually open our own wellness centres, providing free services to those who need it. Being chronically ill is unimaginably tough but here at CISFA UK we understand, every team member who helps run the organisation has gone through/is going through what you are, so if you are in need of a helping hand, a listening ear or a community you can relate to, please join us on any of our social media platforms.
For more information about CISFA UK, visit their website here, or visit their Facebook page here. You can also join their bespoke Facebook group here, and follow their work on Instagram here. Thank you so much for sharing your experiences, Joanne!
Astriid’s mission is to help people with chronic illnesses and long-term conditions find meaningful work, by bridging the gap between the Invisible Talent Pool (people who have long-term conditions but who still wish to use their skills and experience in work), and the UK skills crisis. You can find out more about us, register your skills as a candidate, and sign up as an employer, by visiting this page.