From a young age, we learn not to judge a book by its cover, yet inherently it’s something most of us do (even if we don’t realize it). For people with migraine, our “covers” rarely reflect what’s happening on the inside. Dark circles, somber expressions and exhausted bodies often are misinterpreted for a bad night’s sleep. They are rarely recognized as side effects of living with a debilitating, invisible illness.
Migraine is An Invisible Illness
If it’s an invisible illness to outsiders, what can we do? How do we get people to recognize that we are living with debilitating disease that can make daily tasks near impossible? How do we combat the belief that we are lazy? There is power in speaking out about our experiences to educate and eliminate stigma.
How many times have you heard a family member, friend or coworker share that they live with migraine and thought, “Wow, I would have never expected that they had migraine.” I know I’ve thought that. There I am contributing to the notion of judging a book by its cover!
Each time migraine is brought up, it’s sparked a conversation and raised awareness.
Shades for Migraine is hoping to spark even more of those conversations by sharing two powerful stories of young women who from the outside look perfectly healthy. In reality, they are both living with migraine (plus other comorbid conditions). They are speaking out about their experiences to help normalize talking about living with an invisible illness.
Jo Beckwith is a YouTuber who created a community of more than 200,000 people who connect with her experience in some way or another. She has lived with migraine since she was 20 years old (almost 10 years). It impacts every area of her life: social and romantic relationships, work opportunities, travel and more. She is also a below-knee amputee. She shares that living with migraine is “exponentially more challenging”. From the outside, her amputation is the only ailment that can be seen, but the invisible illnesses are more debilitating.
The balance of having a life while fighting migraine attacks multiple days a week is exhausting. She commonly cancels appointments and meetings because a migraine attack flares up unexpectedly. She spends countless hours (and dollars) in doctor’s offices trying to find solutions that will actually work.
As a Shades for Migraine spokesperson, she will continue to share her story to new audiences, including through the media and speaking opportunities.
Shades for Migraine’s other spokesperson is Sophia Gonzon. Sophia is a talented singer and songwriter who developed a successful career for her young age. The life she lives is far from what she planned for herself. From the outside, you would never know the battles Sophia overcomes each day.
Sophia’s migraine journey escalated in 9th grade after severe bullying incidents that led to PTSD. She was struck with chronic, daily migraine. Every day, she lives with some level of pain. On most days, her pain levels were at a 7-9 on a scale of 10. Yet no one, including teachers, doctors and principals, would believe her because they couldn’t see her pain. (Ironically, a schoolmate broke a leg and received an exception for homebound school. Sophia’s requests were continuously denied.)
She missed most of her teen years. Today, Sophia’s diagnosis is chronic daily migraine, fibromyalgia and arthritis. She also lives with anxiety and depression. This complex blend of conditions isn’t easy to diagnose or treat. She has seen countless doctors and tried a plethora of treatments including Botox, Aimovig, Ubrevely, nerve blocks, diets, acupuncture, cryotherapy, hypnotic therapy, Cefaly, laser therapy and the list goes on.
As a young girl, she wanted to be a veterinarian. Now that she is older and countless illnesses have taken precedence, she has decided to pursue a new dream. Her struggles paved the way to develop a new passion in music, her form of art therapy.
When her first single “Daddy Issues” released, Sophia was 16 years old. Within the first two months of the release, her song gained 100K+ streams on Spotify and now has amassed 4m+ streams/views.
Shortly after, she released her follow up single “Out My Way”. It is an anthem to inspire women and young girls around the world who may be living with burdensome conditions such as PTSD, migraine, arthritis, fibromyalgia, ADHD, OCD, clinical depression, social anxiety to stay strong and persevere.
Now working with numerous highly acclaimed producers and recording engineers, Sophia continues to write and record music to inspire, raise awareness, empower and motivate people. As she gets better and becomes stronger, she sees herself on stage doing live performances and releasing a song on a monthly basis.
Though living with chronic pain sometimes feels like “an overwhelming sense of unfairness,” Sophia works hard to find the positives in living with these diseases. She often has people reach out to her to share their bullying and chronic illness experiences. Knowing that her music may inspire people to share their stories makes her wonder if helping others is the reason for her pain disorders.
She says, “I probably won’t be able to party like a rockstar, but with that, maybe I’ll be more successful than others from maintaining a more regimented, consistent, reliable daily routine. I hope my story helps some people at the very least to know they are not alone.”
Share Your Story
Shades for Migraine is honored to share Jo and Sophia’s stories. Though unique to one another, they both share a common theme. They are unveiling the true impact invisible illness can have on a person’s life. We encourage you, in whatever outlet you feel comfortable, to share your story. You never know with whom it will resonate.
Don’t forget to share your story and post a picture wearing sunglasses on social media with #ShadesForMigraine.
Shades for Migraine/Association of Migraine Disorders