Lady Gaga has spent a lot of her career suffering in silence—until now. In her new Neflix documentary, Gaga: Five Foot Two, the pop star opens up about the debilitating chronic pain that she regularly experiences. In the film, Gaga doesn’t name the illness that she is battling, but she revealed via Twitter that she is suffering from fibromyalgia.
“I wish to help raise awareness & connect people who have it,” she wrote. “I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other.”
Since becoming open about her pain, Gaga has had to postpone the remainder of her Joanne World Tour, opening up even more about the health issues she is facing. “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,” she wrote.
“I’m a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love most in the world: Performing for my fans. I am looking forward to touring again soon, but I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more.”
Gaga’s words moved many of her fans—but they also stuck a personal chord: My own mom has been suffering from fibromyalgia for almost 30 years. Throughout most of her pain, doctors didn’t have a diagnosis, often making her feel weak or lazy for complaining about fatigue.
As a daughter, I, too, have been guilty of writing off her pain. I’ve been disappointed when she cuts our mall trip short because her knees are aching. I’ve given her grief for heading up to bed early when I want to watch another episode of Scandal together. And I take for granted the times when she’s a ball of energy, assuming that her good days mean the bad days can’t really be that bad.
Gaga repeats a similar sentiment in her documentary, saying her illness is often misunderstood because it's often invisible. On stage, she appears full of life and energy, when in reality, the adrenaline and cheers from her fans are the only things getting her through her performance.
I sat down with my mom to find out what else I’ve misunderstood about her chronic illness. Read on to hear her describe what it’s like to struggle from fibromyalgia in her own words:
I saw a rheumatologist for the first time when my son was two; He’s now 31 years old. As a young mother I was taking care of two children and a home, and experiencing exhaustion mid-afternoon. They did some blood work and told me that I had Epstein-Barr virus. The rheumatologist told me to eat carrots because they would help to boost my energy. The response was very much, “Stop feeling sorry for yourself.”
As time progressed, my aches and pains were present on and off. I was in my 30s and didn’t think too much of it. The doctors said I had chronic fatigue, but I wasn’t put on any medication for my exhaustion. There would be flare-ups where I’d have longer periods of fatigue, but I would try to fight it off, both mentally and physically. I would try to remain as active as I could, because, I thought, if you feel disabled and you feel like your body isn’t able to function at the capacity that you’d like it to function at, you won’t.
Tried as I did to keep myself moving, the pain and fatigue progressively got worse. In my 50s, I was feeling debilitated by inexplicable aching joints. I hadn’t hurt my wrist or sprained my ankle, but I was having joint and muscle pain. I’m not a tennis player, but I had tennis elbow. I had pain that couldn’t be connected to a particular injury. When I expressed my symptoms to other people, they’d say, “Rest a little bit. You’re doing too much.” Because they see you functioning at a normal level and you don’t look ill, it doesn’t seem like anything’s wrong. So to get to the point where a doctor acknowledged that I had a chronic illness, it helped me feel like I wasn’t going crazy.
A rheumatologist began treating me with various drugs at lower doses to see how my body would react. I had adverse reactions to both Lyrica and Savella, and now I’m on a therapeutic dose of Neurontin. I go through trial and error of different drugs, and follow up with blood work as well. Sometimes they stop working, so you have to increase the dose or change the medication to find a better fit.
The medication for fibromyalgia is supposed to quiet overactive nerves. If you get to the right dose of the right medication, it works to an extent, but there’s no cure-all for chronic pain, nor does one drug work for everybody.
Fibromyalgia is hard for people to understand, especially if you look to be physically healthy. When I was first experiencing these pains, I was in good shape and had an active life, so people didn’t believe me when I said I was having this pain or fatigue. In the beginning, it was even difficult to convince the medical community of it. Because it wasn’t always acknowledged as a real illness, going through counseling and talking about it is actually very helpful, because sometimes you think you’re going a little nuts.
To those suffering through chronic pain, I say this: Acknowledge that it is real, get the medication that is right for you, and when you need to let yourself rest, listen to your body. No one else quite understands it like you do.