A nurse says her mood spiralled when she was diagnosed with a chronic illness, but now she wants to help others fight back with messages of positivity on social media.
Roxanne Jackson, 35, is an ICU nurse at Grimsby’s Diana Princess of Wales Hospital. She has the connective tissue disorder Ehlers-Danlos syndrome and, last year, her health deteriorated to the point her stomach stopped working properly.
She said: “Obviously throughout my journey, because it has been a long journey, the mental health of side of things is so important. My friend put it in a really good way the other day; she said it is almost like you have been through the stages of grief.
“You’ve been in denial, you’ve been angry, you’ve been really down and upset, and now you have come out of the other side with a bit of fight.”
Although she currently has to be tube fed, Roxanne hopes to eat again one day with the help of physiotherapy and wanted to thank all the nurses, doctors and support staff on C2 Ward where she was an in-patient. “They are absolute gems,” she said.
Roxanne does not like to emphasise the bad side of her condition, but described not being able to eat as “heartbreaking”. She said: “I am a massive foodie, I love my food. You don’t realise how much not being able to eat affects you mentally.
“It is such a social thing as well. Christmas for me was just unenjoyable. You can’t have your Christmas dinner, you can’t have your chocolates. We live in England, where we celebrate everything with food.”
The mum-of-two turned to social media such as TikTok and Instagram after her diagnosis to find others on similar journeys, but “everything was quite daunting and it was a lot of doom and gloom and all the things that could go wrong”.
Unfortunately, Roxanne said the negativity “pushed me further down a hole” and she felt like “I’d lost who I was”. She has now taken upon it herself to try and change social media by encouraging people in chronic illness communities to post uplifting dancing videos.
“Fast forward a year, I’m still broken, but I’ve now decided I want to change the algorithm and the FYP [For You Page] of what it means to be part of the chronic illness community,” she said.
“So I’m starting a movement on TikTok and also Instagram whereby I’m trying to get members of the chronic illness community and whoever else wants to join in to raise awareness for the community by taking part in the #dancingitoutchallenge.”
Roxanne said the idea of the movement is for people to “show themselves as who they are alongside any aids they need to live with and celebrate themselves, whilst having a little boogie”.
In her clips on TikTok and Instagram, she dances to People, Places and Things by Sonny Tennet and says the lyrics “resonate profoundly to what it’s like being chronically unwell”.
Roxanne said: “We do meet people and go places which change us and break us, but also make us. So my videos I’ve done showing my journey over the last year, and also a video thanking and giving shout-outs to nurses and doctors who have looked after me in the last year, and then one thanking my family.”
Roxanne hopes that in the future when somebody diagnosed with a chronic illness starts exploring it on social media, they are “flooded with beautiful broken people who are smiling and spreading positivity through this movement”.
She said she wants the movement to show “just how utterly sensationally strong each person is because they’re fighting through all the dark and shining that light”.