2023-06-26 05:50:03
Katrina Itken, BBC News
3 hours ago
image copyrightAnna Cooper
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Anna underwent many surgeries, and the doctors had to open a stoma in her colon and provide her with a urinary catheter.
An online content creator with a hidden disability says her work has helped her raise awareness and eased her feelings of loneliness.
Anna Cooper, 30, of Wrexham, Wales, was diagnosed with endometriosis 11 years ago.
Anna underwent 16 surgeries, her colostomy was opened twice, she was connected to a bag to remove waste, and a catheter (small tube) was installed in her bladder.
Anna started sharing her experiences on the social networking site Instagram. And about that, she says: “Sometimes revealing the details of your life and feelings on the Internet is scary. But it helps people to feel some comfort and reassurance.”
Although, legally, not all people with long-term health problems or colostomas are disabled, Endometriosis UK, a charity that works to raise awareness and help endometriosis sufferers, says people whose condition has a negative impact ” colossal” or “far-reaching” impact on their lives can be classified as disabled – although they sometimes have to fight a legal battle for recognition of their disability.
Anna, who lives with her husband Scott and seven-year-old daughter Grace, says: “I was constantly told I was over-indulging and that I should understand that it is part and parcel of being a woman and that painful periods are normal.” “.
Anna gave birth to her daughter at the age of 22 after a very difficult pregnancy.
“I felt very grateful, very fortunate, but the experience was not without its challenges,” she says.
“They were constantly telling me that my situation would be much better once I had a baby, and that endometriosis would magically disappear, but it didn’t happen. For me, my disease was causing me more weakness and pain.”
image copyrightAnna Cooper
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Anna Cooper, her husband Scott, and their daughter, Grace, whom they had in 2016 after a difficult pregnancy
While Anna was trapped in a “vicious circle” of health problems, she says the biggest challenge she faced was the lack of psychological and mental support.
“I think that’s what made me turn to social media. There are so many people in my situation – some of our experiences are often the same at some point in our lives.”
Anna, who has had symptoms of the condition since she was 14, has built a community of 13,000 followers on Instagram and co-founded a charity called the Menstrual Health Project.
Anna says: “My Instagram account has turned into something like a diary, as I started to share the effects of the disease on me with my followers.
“I know so many other accounts that have helped relieve my loneliness.”
Anna says that the isolation she was forced into when doctors opened a new stoma in her colon at the beginning of the Corona epidemic left her with a constant feeling of shock.
image copyrightAnna Cooper
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Anna has been hospitalized frequently since she was 14, but she says that when people look at her, they have no idea she is suffering.
“I think that’s why so many people turn to others through the internet, for moral support, but also to try to understand their condition.”
She says that diagnosing a person with a hidden disability may lead to a sense of isolation for many, especially when they lose their friends little by little.
She adds: “For me, he didn’t understand [أصدقائي] Why didn’t I go out all the time, why didn’t I go to university, why didn’t I drink – why didn’t I do all those things that society usually accepts at a certain age.”
“There is an absence of consciousness, because your bowels are not hanging out of your body for everyone to see and know that you are suffering.”
Anna went to Parliament to discuss the issue, and hopes that she will succeed in spreading the culture of menstrual health more in the educational curricula, and that it will change its status as one of the taboos that many do not want to discuss.
“I have a daughter, and I don’t want her to suffer in the same way as the women of my generation and the generations before it did.”
She adds that talking about her experience on social media “gives you a voice that you use to scream and express any problem you suffer from.”
‘For me, it’s all about spreading positive energy’
Keith Thomas, 61, also has an ostomy, having been diagnosed with ulcerative colitis in 2008.
Keith lives in Llanelli, Wales with his wife, Jane, and works as a bus driver, but before contracting the disease, he was working in a factory.
“The period between 2008 and 2012 was pretty atrocious,” he says.
“I would get up around 7am and get to work at 7:30. I would barely drive to the end of the road before I found out I had pooped, then go home to take a shower. The ball? I asked for sick leave ninety percent of the time.”
image copyrightKeith Thomas
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Bus driver Keith Thomas uses social media to spread positive energy about hidden disabilities
It was a ‘dark period’, Keith says, and after having a colostomy and a bag to remove waste, I felt like I had been ‘born again’.
“Everything I put on [وسائل التواصل الاجتماعي] It’s about spreading positive energy. Believe it or not, this helps others. When they say positivity begets more positivity, it really is.”
Like Anna, Keith started using social media to document his experience, but he now has 18,000 followers across his various accounts, and TikTok is the platform he uses the most.
Keith says he has no problem showing others his cyst, and explaining how at 61 he looks “fit, healthy and feeling better than ever”.
“I enjoy posting on social media, and I get great feedback. It allows me to be myself.”
image copyrightKeith Thomas
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Keith says people often judge him before they know he has a disability
Keith remembers when he went to the theater one time and someone gave him an angry look because he used the handicapped restroom.
“Usually people tend to judge before they know anything,” he says.
“I look normal, but if it leaks, I have to change the bag.”
‘I don’t feel so lonely anymore’
Bethany Davis, 24, also from Llanelli, suffers from a number of chronic diseases, including fibromyalgia, chronic fatigue syndrome and postural orthostatic tachycardia.
Bethany, a Swansea University graduate with more than 50,000 followers on TikTok, says her precarious health condition has made it difficult for her to follow traditional academic and career paths.
But she says being able to adapt her work on social media to her health has given her a way out.
Although her main goal is to share the Welsh language and culture on social media, she has gradually begun to talk about her invisible illnesses.
“I have health issues that make me handicapped,” says Bethany [وسائل التواصل الاجتماعي] A way of looking at myself from outside this framework.
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Bethany has more than 50k followers on TikTok
She adds, “I had plans to prepare for my master’s thesis. Unfortunately, I have to abandon those plans, as I have to be hospitalized constantly.”
“Through my account on TikTok, I feel that I represent an entire community, and I can show that there are invisible diseases, even if people think that [المصابين بتلك الأمراض] They look healthy. It makes you feel not completely alone.”
“Talking frankly about my suffering has really succeeded in adding another dimension to this community, as it opened another dialogue in which I am proud to participate.”
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