How women are raising Lupus awareness on Instagram
October 14, 2019
Women’s Health & Lupus
Lupus is a chronic autoimmune condition that affects over 1.5 million Americans. The autoimmune disease has a significant impact on quality of life and life expectancy, as healthy cells, tissues, and organs are attacked by the immune system. The overwhelming majority of those afflicted with lupus are women. In fact, it’s estimated that around 90 percent of those diagnosed are women. Because of its impact on appearance, the consequences are felt even more acutely by women. Not only do they have to contend with a chronic illness, but also with body image issues and depression.
The Importance of Lupus Advocacy
In most cases, lupus causes immense discomfort, but can be managed with appropriate treatment. Unfortunately, diagnosis is often complicated and public awareness about the condition remains poor, exacerbating the problem. The disease causes severe joint pain and fatigue, as well as rashes on the skin, including the face. It can also cause sores on the mouth and nose, rashes from skin exposure, blood or protein in urine, arthritis, seizures, strokes, and organ damage. In severe cases and when not managed appropriately it can be fatal. A common thread in every lupus story is the challenge in diagnosis and poor public understanding of the disease.
Most women who speak out on social media platforms like Instagram point to challenges that stem from this lack of understanding. Aside from delays to diagnosis, they also have to deal with condescending and downright malicious behavior because of ignorance. This is why they have been using their voices on Instagram and other platforms to raise awareness. They believe that this is the only way to foster a climate of compassion and support for patients afflicted with lupus.
Because of the high rates of depression following a diagnosis of lupus, social support and self-acceptance are also important. Researchers have also identified support from loved ones, health care providers, and support groups as vital. The more severe the condition and more extensive the organ damage, the greater the support that is needed. For all of these reasons, lupus support groups and organizations have been encouraging women to speak out and become lupus advocates. Many patients have been responding and you’ll find plenty of posts under the hashtags #lupus, #lupuswarrior #lupusawareness, and so on.
How Women Raise Lupus Awareness on Instagram
For many lupus patients, writing and sharing posts about their own experiences is cathartic. More importantly, they recognize that there’s a lack of practical information out there. It’s easier to relate to personal experiences and understand the condition when you can see others struggle and cope with it. It also gives other patients the feeling that they aren’t in this alone.
Jokiva Bellard is perhaps the best known lupus advocacy influencer on Instagram because of the coverage she’s received from mainstream networks. Her selfies give you an unfiltered view into what it’s like to live with the disease. She shares her struggles and talks about the difficulty of self-acceptance and body image issues, inspiring and comforting others who aren’t ready to speak out yet. Although she might be a well-known lupus advocate, she’s not the only one. There are others with that message of hope and encouragement – that you can love yourself and be beautiful despite lupus.
Christine Miserandino, who brought us Spoon Theory, uses her Instagram handle to raise lupus awareness and to talk about other chronic conditions. She shares inspirational quotes, images, and stories, and encourages her followers to get engaged. Like Jokiva and Christine, Jillian Gomes doesn’t let lupus hold her back. A self-described lupus warrior, the business consultant, and entrepreneur began posting to Instagram a few months after her lupus diagnosis and treatment began. She shares pics of herself as well as infographics to help raise awareness about the condition. Jillian also talks about her journey of growth and acceptance through all of the struggles that she had to deal with while undergoing treatment.
Nay Flores and Asha Sharron, likewise celebrate their love for style and fashion, despite their personal struggles. Nay inspires her followers with her deeply personal stories, pics, and videos, including those of her undergoing treatment at the hospital. Asha shared her love for makeup and fashion, as well as her struggles, but her greatest gift was her positive attitude and fighting spirit. A true icon for lupus patients, she kept inspiring others with her posts right unto the end. Tragically, she passed away as a result of lung failure, resulting from lupus complications. She was just 30, but her brief life continues to inspire her many followers.
Other Instagrammers like Alison Hall and Jessica Goldman Foung have also been using the platform to raise awareness and help other lupus patients. Alison is a fitness influencer, who shares her passion for fitness, motivating others to keep going. She makes it clear that she’s in control of her life, not lupus, and that we can still achieve our goals. Looking at her, it’d be hard to tell that she suffers from a debilitating chronic illness. Despite her condition, she’s made it as a fitness coach. Jessica on the other hand uses her Instagram account to share recipes, along with tidbits of her everyday life. As a lupus survivor, who overcame renal failure, she focuses on low sodium or unsalted foods. She’s also the author of Low-So Good, a book that proves that you can find flavor in food without all that salt.
While many of these women were forced to deal with harsh and judgmental comments, they also found plenty of hope, support, and gratitude. Taking note of the power of social media to raise awareness and shape public opinion, organizations like Rheumatology Advisor and the American College of Rheumatology have also started campaigns like “Be Fierce, Take Control” to champion the cause.
Author’s Bio: Anita Fernandes is a journalist and a writer by profession. She has been writing extensively on health and wellness related topics for a little over a decade now. Besides her professional interests, she loves a game of basketball or a good hike in her free time to fuel her spirits. “Health is wealth” is one motto of life which she lives by as well as advocates to every reader, who comes across her blogs.