Lady Gaga brought my invisible illness into the spotlight — and made me feel less alone
I expected Five Foot Two to be a glimpse inside Lady Gaga’s life that left me even more in awe of her talent; I did not expect this Netflix documentary to have me continually choking back tears. Through her immense vulnerability and refusal to put up a poker face in her struggles with chronic pain, I simultaneously felt she was holding up a mirror to the parts of myself I prefer to keep hidden and reaching out a hand to remind me I’m not alone.
Like Lady Gaga, I also have fibromyalgia. Many were unfamiliar with the condition until she announced her diagnosis last month, but I’ve known the brutal intimacies of it since 2012. Every day when I wake up, it’s a question of what parts of me hurt and how much. Do I need a wrist brace to type today? Do I have the energy to exercise? To drive? To get out of bed? A bad flare induces extreme fatigue and full body pain — I feel feverish without actually having a fever, like I’m self-immolating from the inside. Sometimes it can be a dull ache restricted to one or two areas, other times it feels like a fire monster is slithering through my body, curling itself around my joints and sinews.
In spite of these physical symptoms, most days the psychological toll is the worst part. No one talks about the fears that come with a chronic illness –- until Lady Gaga laid hers bare for all to witness.
I’m lucky — very rarely are my symptoms so debilitating that I can’t function at a mostly normal level. Still, I do not have the capacity to balance a full-time job and do basic things like cleaning the house and cooking meals for myself. The prospect of things like aggravating my heat-sensitive symptoms standing over a hot stove is not appealing. Currently, I live at home with my mom, who is incredible and bends over backwards to accommodate the limitations of my illness. But I worry — will I ever be able to live alone and maintain a decent quality of life? Or further down the road, will I find a partner who has the patience to understand that the dirty dishes in the sink aren’t simply a factor of laziness? On top of that, if I want to have children, can I have them? Or will the energy they demand of me be more than I have to give? Gaga, who admittedly has a wider range of resources than many, openly ponders these same things.
Even more than the more personal questions I have to consider, I’ve spent every day since my diagnosis worrying that the house of cards of my hopes and dreams will come crashing down around me. My entire life I have craved a career in the entertainment industry. When I received my diagnosis in 2012, I felt betrayed by own body. The two things that consistently aggravate fibromyalgia the most are high amounts of stress and lack of sleep — both of which are abundant in nearly every entertainment-related job.
And these fears have been realized at times. When I tried my hand at being a production assistant, I made it through one day. The physical demands of the job sent me home in gasping sobs — because of the pain I was in, but also because I knew I had to quit for the sake of my health. When I explained why I was leaving the next morning, I was told, “You’ll never work in this business again with that kind of health problem.” I want to believe this isn’t true — I’ve poured countless hours and a lot of blood, sweat, and tears into making sure my illness doesn’t define me.
Even as I fell in love with entertainment journalism and slightly changed course, there was always a series of questions in the back of my mind: What will they do when they find out you’re sick? Can you actually handle this job? When — not if, but when — you have a flare, will you be able to rest as much as you need? And if I admit my pain, will people think I’m weak? Pathetic? Making excuses?
A fibromyalgia diagnosis is a fraught one knit up with gender issues and our society’s relationship with mental health. Though fibromyalgia bears striking similarities to autoimmune diseases that come with blood markers like rheumatoid arthritis and lupus, it’s purely neurological; your brain incorrectly processes pain signals and amplifies pain across your nervous system.
To the outside world, you look perfectly healthy, and that is increased tenfold when you’re diagnosed at a young age. Medical professionals have told me “it’s all in your head,” that my symptoms “don’t make sense,” and I “must be imagining things.” Family members, in an attempt to comfort me, have assured me that I’m “too young to have these types of issues” and that if I’d only “just calm down and be less stressed, the pain would go away.”
In a sense, they’re not wrong — it is in my head because the problem rests in my overactive neural passageways and misfiring synapses. And I would feel better if I calmed down because anxiety is a factor in causing the condition to flare. But because fibromyalgia disproportionately affects women, it also often feels like I’m being dismissed out of hand. The condition doesn’t frequently impact men (who have historically dominated the medical profession), so how could it be real? Fibromyalgia wasn’t even coined as a term until 1976. I often wonder if it’s possibly a version of what the 19th century once categorized as “hysteria” and “the vapors.” If nothing else, it’s the modern-day equivalent in perception.
When I watched Five Foot Two, I suddenly felt seen in a way I never have before. I’m not the only one asking these questions. One of the biggest, most inspiring pop stars on earth is asking them too, and it gave me an immeasurable sense of relief. Don’t get me wrong — I’m certainly not happy she’s my sister in chronic pain. I wouldn’t wish this on anyone, but I finally have reason to believe my invisible illness might not be so invisible anymore. That people will stop telling me my pain is in my head. That I won’t have to spend my limited reserves of emotional energy explaining to someone what it feels like. That medical professionals might decide “there is no cure and symptoms are difficult to treat” isn’t good enough.
Now, because of Lady Gaga, I feel hopeful about the resources medicine might devote to the condition. It’s not only the dream that her journey might lead to treatments and cures previously unimagined (although wouldn’t that be great?). Nor is it simply the chance that I won’t have to spend so much time justifying my pain to others. More than anything, Lady Gaga has made me realize I don’t need to be afraid anymore.
In Five Foot Two, Gaga tearfully asks, “Do I look pathetic?” Then she puts her face in her hands and says, “I’m so embarrassed.” Hearing Gaga verbalize my own fears quieted them. If she can be the fierce pop star she is while suffering from this, why should I settle for anything less? She can contort her body through a series of impossibly difficult dance steps and belt out songs. Surely, then, my dreams, which are significantly less physically demanding, are obtainable too.
“I’m f—ing strong and I can still be me, but it doesn’t mean I’m not still in pain,” she says in Five Foot Two while preparing to perform a dazzling routine that became the most watched Super Bowl halftime show ever. With her willingness to share this part of her story, Gaga teaches us that no one should let their pain be a roadblock to their dreams, whether they’re mundane or grandiose.
Lady Gaga is an iconoclast, a pop star, a songwriter, an amazing dancer, a survivor, and so much more. She’s made a career of celebrating being “Born This Way” and raising a middle finger to her haters, all while still revealing herself with immense vulnerability as a person of great courage and contradictions. Armed with that knowledge, I feel ready to join her — and put my paws up.