MS sufferer turns to Tik Tok to fill void in French support 

Katie Bryant shares her journey with MS, revealing the challenges of living with a disability that is not visible and finding support through an online community

Katie Bryant is determined to raise awareness of MS, which may not be visible but is debilitating

Katie Bryant was diagnosed with Multiple Sclerosis (MS) in 2019, and will never be able to work again because of it, as well as her fibromyalgia. 

She has relapsing remitting MS, which means she has periods of relapse, when symptoms get worse, and periods of recovery. 

MS is a chronic disease of the central nervous system and is two to three times more common in women than men. Its symptoms and severity vary from person to person and day to day. It can lead to problems with vision, balance and memory, fatigue, difficulty walking, troubles controlling bowels, brain fog and more. 

“It causes a wide range of disabilities, basically,” said Ms Bryant. 

“It is really difficult to deal with, and it is a very difficult disease to understand.” 

Persistent symptoms

Her first symptoms appeared in 2015, with pins and needles and numbness in her right hand. 

“It was like when you lie on your arm and your hand falls asleep, but it was persistent and would not go away.”

After seeing a doctor, she had an operation for carpal tunnel syndrome, believed to be the cause, which only worsened her symptoms. She continued to seek answers and was finally diagnosed with MS in July 2019, a few months after her first MRI in April. 

“It was not a very sensitive way to find out,” she said. “I was basically told: ‘You have got MS, it is OK and you will not die or end up in a wheelchair from it.’” 

After that first bad experience, her second doctor was “lovely” and her experience improved.

“That process was very good and thoughtful, especially in providing names of treatments for me to choose from,” she said. 

“The entire experience has been OK, but time will tell,” she added. She was recently told that her test results are stable, yet she can feel some symptoms worsening, making her feel like she is not being listened to. 

“My right leg is basically numb every day. On a bad day, I cannot drive, I cannot walk up stairs. Nor can I hold things in my right hand, I am always dropping things. I suffer from a lot of migraines and very bad fatigue. Memory and brain fog are bad for me at the moment,” she said about her symptoms. 

“Sometimes I wake up with lots of energy, but by the afternoon I need to go to sleep because I can no longer keep my eyes open.”

Medication side effects

Ms Bryant suffers from the side effects of her treatment as well. She must take an injection of Kesimpta once a month, which is also used to treat certain types of cancer. 

“It has made me sick, led to hair loss and very bad fatigue. It makes my blood pressure drop, so I have to take it at night,” 

Kesimpta is her fourth treatment. Ms Bryant was also diagnosed with JC virus, a dormant virus that can be reactivated in people with MS, leading to an incurable brain infection. This means that many treatments are not available to her. 

“For a long time, I was in denial. I have now slowly grown to live with it but there are days when it is worse, and I cry. I ask: ‘Why me?’ I do not think that I will ever accept it, no one really does,” she said.

Read more: ‘I set up an invisible disabilities media company after my diagnosis’

During lockdown, she started a TikTok page and has now found an online community which she likens to “therapy”.

Her account now has 11,300 followers, and she organises ‘MS Mondays’ from it – live broadcasts where she speaks with and interviews other people who have MS, as well as interacting with viewers who can ask questions in real time.

“We vent, we talk about our problems but we also have a laugh, and it helps everyone. So many people cannot afford mental health help, so I believe it is very important,” she said.

TikTok has been a great outlet for her and she feels she is making a difference for other people, too.

“People message me on social media to say: ‘Thank you, you have saved my life’. MS often causes a dark depression in people who have no one to speak to. If someone is struggling with their symptoms and is having a bad day, I want them to know I am here.”

Another of her good deeds was helping an elderly Englishman who had lost his speech due to MS. She contacted the firm behind an app which helps people in a similar situation communicate with their families, and managed to get it for him for free.

Then, after showing the story to her community, an anonymous member donated a brand-new iPad and the man can now communicate. 

“We still message on a daily basis and I am grateful I was able to help him,” said Ms Bryant.

Read more: How to get free mental health support in France

More mental health services needed

One problem she has identified in French treatment of MS is the lack of mental health support. 

“I was not given a number to call if I needed to speak to someone, there was no leaflet to explain what MS is. It was just a diagnosis and then being told to go home to think about what treatment to get.

“Although I used to be a part of a group, it is three hours away from me so I have no local organisation that can help me,” she said. 

That is why she hopes to become an ambassador for MS and provide help for other sufferers in France, where there are around 120,000 diagnosed cases, or further afield. 

She has seen people with MS in France described as a burden to society, an attitude she wishes to change. 

“We never asked for it, it is very difficult for us and it shortens our lives. It has spurred me on to spread awareness in France and potentially start an association here,” she said. 

To other MS sufferers, she advises: “Never feel alone and do not shut yourself away. There are always people out there to talk to. TikTok, for example, is a brilliant platform – it is not just youngsters doing silly stuff.”

She added: “There needs to be more awareness and we must get rid of the stigma around it. There should be education in schools.”

Invisible disability

When parking in disabled bays, Ms Bryant sometimes gets dirty looks from people because she does not outwardly appear to suffer from a disability. 

“People need to understand that MS and other disabilities can be invisible. It is great that there is so much support for diseases like cancer or Alzheimer’s, but so little awareness is raised of autoimmune diseases and that needs to change,” she said. 

Originally from Kent, she moved to France in 2003 with her parents. 

“I am still here now, with two beautiful children,” she said. She is due to get married on June 29 to her fiancé, who she described as her “biggest support system”.