On September 12, 2017, Lady Gaga tweeted that the chronic pain she suffers from in her documentary Five Foot Two is a symptom of fibromyalgia. A week later, her publicist circulated a press release announcing the postponement of her European tour, which was scheduled to begin September 21st.
“I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring,” Gaga wrote in an Instagram post the same day.
Shockingly little is known about fibromyalgia and what causes it. Characterized by inexplicable pain and fatigue, it is often labelled an “invisible disease,” because there are no outwardly discernible symptoms. There is currently no cure. In the aftermath of Gaga’s announcement, Man Repeller reader Yael Palmon told me about her experience being diagnosed and living with fibromyalgia. Below is her as-told-to story. -Harling
Most people with fibromyalgia suffer for years until they get a diagnosis because nothing shows up on tests, nothing shows up on any scans. It is often a last-ditch diagnosis once everything else is ruled out. My journey was a little non-traditional. In October 2015, I got a migraine that lasted for five weeks. I had to drop out of school. I was like, “Oh, I’m just going to take a year off. It’s fine, it’s no big deal.” Then, three months later, the migraine came back. This time it lasted for nine months.
I was up to my ears in medical tests. I was in such an exaggerated state of pain that one day, in addition to the migraine, I just couldn’t move. The pain had just spread everywhere. That was what instigated my fibromyalgia diagnosis. The way my doctors explained it, the trauma of the migraine kind of freaked my body out to the point where I then developed fibromyalgia.
I hope Lady Gaga’s openness about her fibromyalgia diagnosis helps legitimize the suffering caused by the illness. Seeing someone who is so dedicated to her fans and so successful have to give so much up shows how serious and debilitating it really is. It meant a lot to me that she explicitly cited it as the reason she is cancelling her European tour.
Her candor is especially meaningful in the context of her new documentary, Five Foot Two. The narrative arc paints a picture of her being able to persevere through her pain flare-ups and still maintain this very intense pace and career. But her announcing the diagnosis and tour hiatus prior to the documentary release validates a lot of the sacrifices fibromyalgia sufferers have to make.
My life is totally different from the life I had before the illness. I was studying fashion at Parsons, I was living in New York, I was very active and independent. Now, I’m very much at the mercy of my body. Everything I do is dictated by my health, which can shift at any given moment, so I’m constantly checking in and asking myself how much I can do today, and then three hours later I ask myself the same thing. I take a lot of breaks. I can’t work a full-time job right now, so I’m just babysitting for a few hours almost every day. I spend a lot of time in bed, a lot of time watching TV.
I moved from New York to Israel when I got the diagnosis. A lot of my extended family and my boyfriend are here, and the pace of life is a lot slower. Public healthcare is also better. I’m paying the equivalent of $20 a month for the best public healthcare available here, and it covers quite a bit.
Exercise is one of the only things that is known to really help mitigate fibromyalgia symptoms, but when you’re in excruciating pain you obviously can’t exercise. It’s a catch-22. I have to rest constantly. I have a million pain creams. One time I layered three of them on simultaneously and it was one of the prouder moments of my life.
The medical community knows so little about the illness, so it’s a lot of trial and error. There are medicines you can take, but they can be very hit or miss. A lot of chronic illness patients use and rely on painkillers and opiates to get through the day, but they gave me such terrible side effects that I prefer not to take them unless it’s an emergency. Medical marijuana has helped a ton — I’ve was never a smoker but I’m a huge believer in it now.
A big struggle with fibromyalgia and many other chronic illnesses is that they are invisible illnesses. I look perfectly healthy to strangers. I have a fear of being asked to give up my seat on a bus for someone who looks more worthy. I was recently waiting in line at a very crowded place where seniors and mothers and other select people were able to skip the line and sit down but, as a totally healthy-looking young woman, they didn’t believe me when I asked for a seat. I’ve also been honked at lots of times when crossing the street too slowly.
As many studies will tell you, women’s pain is consistently taken less seriously by medical professionals, and the majority of fibromyalgia sufferers are women. I feel really lucky that none of my doctors have ever doubted me. I can’t even begin to imagine what it’s like to be in the amount of pain that we’re in and have someone tell you, “You’re absolutely not in pain. This isn’t real. It’s all in your head.” It was clear to me that Lady Gaga struggled with that stigma in the documentary when she calls herself pathetic for being in pain.
The most frustrating thing with fibromyalgia is that you can’t fix it. Sometimes you can you can manage it, sometimes it just goes away, but there’s no proven formula. Knowing that takes a huge mental toll. After being diagnosed with fibromyalgia, I felt like my identity had been taken away from me. I was very career-oriented, and pursuing that had been a huge part of my life since I was nine. It took me a long time to realize that my illness hasn’t erased that aspect of my personality — that there’s a difference between physically not being able to work hard and being a person who doesn’t work hard. I have a lot of guilt and self-doubt about that part of myself, but I’m still a hard-working person. That’s still part of my identity.
At the end of the day, I try my best to find the humor in what I’m experiencing. I have to try. Life is too absurd not to. I talk a lot about the ridiculous things that happen to me as a result of having fibromyalgia because sometimes they’re pretty funny — like, I had to get plastic silverware because normal silverware was too heavy! And one time, my boyfriend once had to brush my teeth for me because I couldn’t do it.
Sharing these moments has showed me the importance of social media for people with chronic illness. My healthy friends, as amazing as they are, struggle to find the humor in things so depressing — but fellow sufferers (we call ourselves spoonies) can. Having people to joke with and vent to who actually get it has helped me in so many ways. We don’t mean it as a “pity me” thing, we mean it as a “this is bonkers, you gotta laugh it” thing. That’s how we survive.
Follow Yael on Twitter at @migraineyael.
Photo by Kevin Mazur/Getty Images.