In some of my past columns I have talked about the importance of educating people about our diseases and how daunting this can be because you never know how they are going to react. The general public seems to be particularly ignorant when it comes to autoimmune disease and many connect it to AIDS, which is unfortunately already associated with a great deal of stigma.
In fact, the National Institute of Health estimates that there are at least 80 autoimmune diseases, but the aforementioned ignorance breeds fear and a lack of understanding, making our task of raising awareness doubly difficult. For the record, autoimmune disease is when the body attacks itself by incorrectly recognizing its own organs or tissues as foreign bodies.
In today’s column I’d like to talk about celebrities who have raised awareness about chronic illness and lack of body confidence. I’m going to focus on those illnesses that are attached to a certain stigma because in my opinion these are the illnesses it is most difficult to “come out” about and when you are in the spotlight and have a certain reputation to uphold, you are likely to be even more afraid about how the public will react. Therefore, I’d like to applaud those celebrities who have had the guts to share their experiences in an effort to improve life for their fellow sufferers. May we gather inspiration from their endeavors!
Veterinary expert, professor and author Temple Grandin suffers from autism, which is interestingly associated with autoimmune and thyroid disease. Autism is a brain disorder that impairs the sufferer’s ability to communicate and relate to others. Symptoms may include repetitive behavior such as body rocking, unusual attachment to objects and routines, as well as depression and anxiety and seizure disorders such as epilepsy. Like many advocates who are later inspired to help others, Grandin was bullied at school and called “tape recorder” because of her penchant for repeating speech. Looking back, Grandin laughs about this, but admits that it hurt at the time.
Grandin went on to become an autism advocate and the inventor of the hug machine, a stress-relieving device that is designed to calm hypersensitive persons such as autism sufferers. Autism increases the sufferer’s sensitivity to sensory stimulation, making physical contact uncomfortable. Despite the stigma associated with autism, Grandin has accepted and embraced her disease: “If I could snap my fingers and become nonautistic, I would not do so. Autism is part of who I am.” As sufferers of chronic illness, I think we know only too well how difficult it can be to attain this recognition.
The person who actually inspired me to write this article was Back to the Future star Michael J. Fox. We were driving down the freeway during a visit to our US relatives and I was confronted with a poster with the catchy tagline “Outfoxing Parkinson’s”. I had always found this eternally youthful actor highly likeable in the time travel films of my teenage years, but this made me like him even more.
Parkinson’s is a degenerative disorder of the central nervous system that impairs motor skills, speech and other functions. It can result in muscle rigidity, tremors and a slowing or even loss of physical movement. In the end, some patients are even unable to walk, talk or take care of themselves and there is no known cause or cure. Despite this morbid outlook, Parkinson’s advocate Michael J. Fox remains admirably optimistic: “There’s no doubt I’m charmed. I’m not crying ‘What a tragedy,’ because it’s not. It’s a reality, a fact.”
Fox also talks about how this disease is associated with older people and his neurologist believes that the slight increase in the diagnosis of younger sufferers is due to accuracy of diagnosis and patients going to neurologists earlier. Diagnosed at age 30, Fox exclaims: “I love the irony. I’m perceived as being really young and yet I have the clinical condition of an old man.” I believe that many of us thyroid sufferers can relate to this. The general stereotype tends to be that thyroid patients are middle-aged, but as we know only too well there are plenty of young’uns amongst us, although thyroid disease often makes you feel older than your years.
Like many of us on Dear Thyroid, Fox was determined to understand his condition and so he questioned several neurologists for information and an explanation. He’s optimistic that a cause and cure will be discovered in the next few years and does his bit towards the fulfillment of this aim by raising public awareness and funds and launching campaigns to normalize people’s perception of Parkinson’s. Fox has set up the Michael J. Fox Foundation, the US’ leading Parkinson’s fundraiser, which has contributed more than $140 million to research. Fox’s first memoir with the optimistic title of “Lucky Man” largely focuses on his campaigning for stem cell research, the hope of many Parkinson’s sufferers.
Fox’s admirable optimism is inspiringly encapsulated in this quote: “The end is not pretty – I’d like to stop it from its logical conclusion – but I’m grateful. It’s made me stronger. A million times wiser. And more compassionate … The biggest thing is that I can be in this situation and still love life as much as I do. Life is great. Sometimes, though, you just have to put up with a little more crap.”
Returning to the topic of autoimmune disease, I’d like to talk about talk show host Montel Williams who was diagnosed with the autoimmune disease multiple sclerosis at the age of 27. A study published in the European Journal of Neurology states that antithyroid antibodies are five times more prevalent in people with untreated MS. That is why it makes sense for MS patients to have a thyroid check-up. Is there anything that isn’t associated with thyroid disease which, it seems, is rarely just one disease.
To paraphrase a passage from Mary Shomon’s Living Well With Autoimmune Disease, MS is a chronic inflammatory disease of the central nervous system that affects the brain and the spinal cord. It attacks the covering of the nerves, the myelin sheath, resulting in various neurological disturbances such as psychological and cognitive weaknesses, weakness or paralysis of limbs, numbness, vision problems, speech difficulties, problems with walking or motor skills, bladder problems and sexual dysfunction.
The Montel Williams MS Foundation conducts research on new treatments and ways to make them universally available. With the same optimism and determination as Michael J. Fox, Montel states: “I’m going to keep on having these fundraisers until a cure is found. Technology is advancing and so are the treatments. One day a cure is going to happen!” In addition, he is a spokesman of the Partnership for Prescription Assistance (PPA) that helps low-income patients apply for free or cut-price prescription drugs.
As I mentioned above, some celebrities also promote body confidence. One such lady is Emme Aronson, the world’s leading model for plus-sizes (US size 12 and above and 60 percent of American women). Emme is a size 14 – 16 and concerned about giving women size 14 and above a voice: “My book (‘True Beauty: Positive Attitudes and Practical tips From the World’s Leading Plus-Size Model’) and my talks are vehicles to say, ‘You’re not alone.’ Women who’ve read the book call me and cry. It’s the first time they’re hearing a positive, nonbashing message.”
It all started for Emme at age 12 when her abusive step-dad Bill ordered her to strip down and, like a plastic surgeon, drew circles in black marker all over her body to show her where she needed to lose weight. She mistakenly thought she had scrubbed them off when she later went for a swim, only to be cruelly ridiculed by one of the boys who spotted one of the remaining marks. This whole experience led her to undergo therapy to deal with her resulting anger and pain.
Ultimately, just like Temple Grandin, her childhood heartache instilled in her the desire to help others: “I don’t promote obesity and I don’t promote anorexia. We should all have more compassion for our differences. We don’t have to be the same to be accepted.” I, like many thyroid sufferers, have struggled with society’s body confidence-damaging perceptions for years and so I can only applaud this attitude.
Actress Kate Winslet, who was overweight as a child, shares Emme’s aspirations to promote body confidence. I remember when Titanic came out, she was mercilessly bashed by the press for being more curvaceous than other female celebrities. However, this didn’t put Kate off embracing her own body and persuading others to eschew society’s unrealistic pressure to look a certain way: “Nobody is perfect. I don’t believe in perfection. But I do believe in saying, ‘This is who I am and look at me not being perfect!’ I’m proud of that.”
Role model Kate is also concerned about passing on her message of body confidence to the next generation: “I’ve just started subtly telling Mia (her daughter), ‘I love my belly. You and Joe came out of there. I’m proud of my belly and I’m proud of my hips. I love my body’. I want to give something to her that is empowering so that when she comes into her teenage years she feels confident in herself.”
Incidentally, a poll commissioned by Slimming World, the largest UK-based weight loss organization, showed a positive shift towards women aspiring to be more like curvy celebs such as Kate Winslet. Slimming World’s head of nutrition Dr. Jacquie Lavin explains: “It perhaps suggests that it is not being skinny that is most important to them anymore, it is being healthy.” However, she adds: “There still remains a great deal of pressure on women to conform to an unrealistic ideal and our survey showed that a massive 85 percent of women are at least occasionally unhappy with their weight.”
Last but not least, I’d like to talk about Magic Johnson and his battle with AIDS, as well as his gutsy advocacy efforts. Magic announced his infection in November 1991 and subsequently founded the Magic Johnson Foundation to research new treatments and make them universally available. Johnson states: “I’m going to keep on having these fundraisers until a cure is found. Technology is advancing and so are the treatments. One day a cure is going to happen!” He was also the main speaker for the UN’s World AIDS Day Conference in 1999. Johnson’s campaigns dispelled the myth that only drug addicts and homosexuals are at risk of infection. He aimed to educate people on what HIV is about and teach them not to discriminate against HIV and AIDS sufferers. Magic takes a daily drug cocktail to prevent his HIV infection from progressing to AIDS. He entered a partnership with Abbott Laboratories to publicize the fight against AIDS in African American communities.
I think we can all learn a lot from these celebrities and their gutsy efforts to raise awareness and make the world a better place. Now it’s your turn. Who are your role models and why? What are you doing to raise awareness of thyroid disease?