The Salisbury TikToker informing people on chronic illness

By Sammy Jenkins
BBC News

  • Published
Image source, CAT RAY
Image caption,
Ms Ray said she has made "the most amazing friends and support network" by sharing her experiences online

A woman living with a rare chronic condition says sharing her experience online has given her purpose again.

Cat Ray, 31, from Salisbury, was working as a cruise ship entertainer before being diagnosed with behcet's syndrome disease.

The condition to which there is no cure results in inflammation of the blood vessels and tissues.

Ms Ray said the condition had caused her to go down to six stone in weight and to be tube fed for over a year.

Suffering with "different and odd" symptoms as a child, including joint pain and "constant tonsillitis", Ms Ray said she went back and forth to the doctor for scans and tests but "it was never investigated properly".

Image source, CAT RAY
Image caption,
Ms Ray said: "Everything is different when you live with a chronic condition. I can't bathe on my own, shower, wash my air or shave my legs on my own"

Married at the time, Ms Ray said things finally came to a head years later when she had numerous visits to an STI clinic after experiencing re-occurring genital ulcers, a common symptom of the disease.

However, referred back to a GP, Ms Ray said it was a junior doctor who had only been in the job for six weeks that "joined all the dots" and diagnosed her with behcet's disease.

What is Bechet's disease?

  • Behcet's Syndrome or Behcet's disease is a rare chronic, debilitating condition that results in the inflammation of the blood vessels and tissues
  • Symptoms include genital and mouth ulcers, red, painful eyes and blurred vision, painful stiff and swollen joints, headaches, acne-like spots, and can affect any organ in the body
  • In severe cases, there's also a risk of serious and potentially life-threatening problems, such as permanent vision loss and strokes
  • Symptoms typically come and go in a series of flare-ups
  • The disease can often, but not always, become less severe with increasing age, where flare-ups become less aggressive and happen less frequently
  • There is no cure

Source: Behcet's UK

"The doctor couldn't believe her own words."

"She told me, I never thought I'd meet someone with this condition," she added.

Even rarer, Ms Ray also has neuro-behcet's disease, which has caused partial paralysis of the stomach and bowel issues, making it difficult for her to pass stool.

Ms Ray said: "I haven't had a poo in three months. I'm packed with poo. My doctor thinks some of it has been there for three years."

Ms Ray now has to undertake plasma exchanges every four to six weeks for three days, where they filter the plasma out of her blood and give her donor plasma.

Image source, CAT RAY
Image caption,
Ms Ray said she was reluctant to share her experience at first but "felt like I was being a bit selfish" by keeping it to herself

Ms Ray who now uses walking aids and a wheelchair, said: "I'm the 1% of the 1%. I'm a very rare case of a very rare condition."

Underdoing twice-a-year check ups, Ms Ray said both her and specialist doctors had monitored and managed the condition quite well - that was until her dad died from a brain tumour in December 2017.

Ms Ray said during the weeks and months after her father's death, her marriage broke down and she lost two of her grandparents.

She believes the stress and grief sparked her illness to deteriorate even more and caused her to experience "out of control seizures".

"In the space of a few months my whole life had blown up and in that process my health blew up too."

"I was just throwing up every time I ate. I was described as a walking corpse - even though I couldn't walk."

Image source, CAT RAY
Image caption,
Ms Ray said sharing her experience online was her way of raising awareness of her condition and other chronic illnesses

Ms Ray, who had to give up her entertainment business, said at that time she was just "trying to get through each day".

Ms Ray said whilst it's been a "massive uphill struggle to try and claw" some of herself back, sharing her experience on Instagram, a blog, her podcast "Rising from the Illness" and TikTok, has given her "a reason" and "so much feeling of I'm doing something".

"It's made me think - maybe I can't sing anymore but I'm still here for a reason because these people are thanking me."

Ms Ray said: "Hopefully someone out there, like me when I was 23, struggling when everything fell apart, can see oh there's this person going through it as well."

"It would have helped me when I was going through diagnosis," she added.

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