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Unpacking the effects of celebs speaking out about their chronic illness

From Alexa Chung to Lady Gaga, more and more celebrities are opening up about their experiences of living with chronic illness. But what effect does this have on other people who suffer from the same thing?

Last month, TV presenter turned fashion designer Alexa Chung took to Instagram to open up about her struggle with endometriosis – an often painful disorder in which tissue that normally lines the inside of your uterus grows outside of the uterus. Posting a picture of herself standing in a hospital corridor, accompanied by hashtags including #endeometriosisclub and #sorryifyouhaveittooitsucks, Chung wrote, “I don’t want to belong to any club that would accept me as a member, but here I am.” The post resulted in numerous comments praising Chung for speaking out openly about her illness, with many people using the platform to open up about their own struggles, too. One user commented, “Welcome to the toughest club there is. Like fight club, but with a uterus,” while another said, “It’s not a club any of us would choose but we are a strong supportive club. So many people endo warriors.”

Alexa Chung is far from the first celebrity to open up about her health struggles. As social media continues to thrive in modern society, we have increasing access to the personal lives of celebrities who choose to share more with the public. Selena Gomez revealed in 2015 that she has Lupus – an autoimmune disease that causes harm to organs and tissues. There’s also Bella Hadid who has spoken out numerous times about living with Lyme disease – the tick-borne illness that can attack the immune system and lead to serious complications including arthritis, meningitis, heart failure and several neurological problems. In 2017, Lady Gaga told Twitter she had been diagnosed with fibromyalgia – an illness characterised by muscle pain, tenderness and fatigue and is believed to arise from an overactive nervous system which amplifies painful sensations, while Selma Blair uses her Instagram to share regular updates about her experience living with MS – a chronic condition that can affect the brain and spinal cord, leading to symptoms including problems with vision, muscle spasms and fatigue. 

Popular YouTuber Hannah Witton has ulcerative colitis – a long term condition where the colon and rectum become inflamed. After a flare-up of her condition led to major surgery last year, which left her requiring a stoma bag, she has made countless videos and written articles sharing intimate details about her life for which she has widely praised. “I had my colon removed and I now have a stoma, which is basically part of my small intestine sticking out of my body and then a stoma bag on it. And I poo into a bag,” she said candidly in a video. “So that’s me. That’s my new life.” 

When celebrities speak out about their illness, more often than not, it becomes global news. This, in turn, can influence the conversation surrounding that illness, which can have a very real impact on other people who suffer from the same thing – the effects of which can be both positive and negative. 

For Sally, who has both endometriosis and fibromyalgia the effect has only been positive. Not only does it create an awareness of the illness, but it also gives you someone to effectively share your experience with. “Chronic illness is very isolating. Just knowing that someone else is out there feeling the same is a real comfort, especially on bad days. The one that sticks out most in my memory is Lena Dunham sharing a post of her at the Met Gala which is epic and she looks stunning and healthy, and the next post was her in a hospital bed that same evening. It was an accurate representation of the illness.”

However, Katie, who has been diagnosed with endometriosis for seven years, has mixed feelings. “I think it’s great when, and I mean when, the information celebrities present is accurate. But celebrities have said things that are not true - like that (endometriosis) can be cured by changing your diet, a hysterectomy, or that exercise will make it better.

“That being said, when celebrities speak out it is brilliant to get the word endometriosis out there. When I was diagnosed, there was no one talking about it, or that’s how it seemed. Kate Ford (who plays Tracey Barlow in Coronation Street) is the best for being very honest and careful about what she shares.” In fact, the actress only went public about her struggles in 2018 after seeing US singer Halsey share her experiences with the same condition.

Of course, there are countless charities all over the world dedicating time and resources to championing awareness days, weeks and even months to help raise awareness for a whole host of chronic illnesses, such as Crohns & Colitis UK’s Awareness Week in December and the Worldwide Endometriosis March, in March. But awareness campaigns are only as useful as their traction. Someone like Alexa Chung has the ability to reach millions of people with a single Instagram post. 

Furthermore, as studies have shown, people with chronic illnesses often face stigma in their daily life as a result – be it from their peers, colleagues or even health professionals. On top of spreading awareness, having a celebrity such as Lady Gaga or Selena Gomez associated with an illness can help destigmatise that illness. 

There’s also the fact that chronic illnesses are often complex, and aren’t always visibly apparent – such as MS, Lyme Disease or endometriosis. Because our society places so much emphasis on physical appearance, people with invisible illnesses are often questioned about the authenticity of their impairment(s). For example, when Real Housewives of Beverly Hills star Yolanda Hadid spoke out about her struggle with Lyme Disease she was accused of ‘faking it’ on multiple occasions as her diagnosis became a major plotline on the Real Housewives show. Seeing someone as visible as Yolanda Hadid, and indeed her daughter Bella, experience something so publicly not only brings awareness to an illness but also brings a sense of validation and understanding to sufferers of this seemingly invisible disease.

Madeleine has Type 1 Diabetes which means her body is unable to regulate her blood glucose levels naturally so she needs to take insulin every day to stay alive. She says that celebrities speaking out about their experiences with chronic illness has helped her. “I think it opens up the conversation and helps people to understand,” she says. “I wish I had heard about celebrities with Type 1 Diabetes before my diagnosis.” Madeleine cites Disney star Jennifer Stone, who is a Beyond Type 1 ambassador and who recently completed four years of nursing school, as an example. “She recently spoke out about her Type 1 Diabetes which I think is so great for young girls watching her with the condition. It shows anyone with a chronic life-long illness they really can do anything.”

Dr Tom Micklewright, medical officer at Push Doctor, notes the positive effects celebrities speaking out about their illnesses can have on fellow sufferers. “On the whole, it is helpful for celebrities to share their struggles with the public. Celebrities hold a unique position of influence in our society; they set social norms and can sway opinions. By sharing their own health struggles, celebrities can help reduce stigma, raise awareness and improve understanding of particular conditions. Prostate cancer, autism, depression and anxiety are all conditions my patients have visited me about, having learnt more about them through celebrity culture.” 

But he also adds that with increased awareness, there is sometimes the risk of increased self-diagnosis, which in turn can lead to widespread public anxiety. “There is a big risk when it comes to the ‘medicalisation’ of society,” says Dr Micklewright. “This is the tendency to define a human problem in medical terms, which drives the need for diagnosis and treatment. For example, while Wayne Rooney’s hair transplant reduced the stigma of men seeking cosmetic procedures, it also shifted public perception of a common, natural process - hair loss - and framed it as something that ought to be treated.” 

There is equally a concern that when celebrities speak out, there is a very real risk of misrepresentation of the realities of an illness. “One celebrity cannot represent the breadth of patients with chronic illnesses,” explains Dr. Tom Micklewright, “There is a risk that the public, in seeing just one facet of an illness, will assume that is all there is to know.”

Risks aside, from creating awareness about an often invisible illness to helping to chip away at the stigmas associated with it, for people living with a chronic illness, the positive effects of having someone in the public eye to share their experience with is immeasurable. As Madeleine sums it up: “It makes it easier for me to navigate through life when people understand me and my condition that little bit more.”