Historically, women who report symptoms such as extreme pain and fatigue are branded “hysterical,” and often treated as if their conditions are purely psychological. Recently, Lady Gaga learned that even her superstar status and loyal fanbase couldn’t protect her from this centuries-old belief.
Gaga made public her debilitating fight with the neurological condition, fibromyalgia, often described in simple terms as ‘chronic widespread body pain’.
I have always been honest about my physical and mental health struggles. Searching for years to get to the bottom of them. It is complicated and difficult to explain, and we are trying to figure it out. As I get stronger and when I feel ready, I will tell my story in more depth, and plan to take this on strongly so I can not only raise awareness, but expand research for others who suffer as I do, so I can help make a difference. 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. If you knew me, you would know this couldn’t be further from the truth. 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 the 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. I love you so much.
Many of her fans expressed disbelief that fibromyalgia was a legitimate medical condition, or that Gaga actually had any disorder at all. [Stop WebMD’ing so much!] The most popular alternate explanation was one big cover-up for needing to cancel concerts.
One group not surprised by the reaction to Lady Gaga’s announcement of her fibromyalgia suffering, people who are diagnosed with fibromyalgia. Both women and men often find the unaffected population doesn’t believe this disease exists.
Lady Gaga documents her journey on Instagram and in a brand-new documentary on Netflix called “Gaga: Five Foot Two”.
What is Fibromyalgia?
Chronic widespread body pain is the primary symptom of fibromyalgia. Most people with fibromyalgia also experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties.
A common roadblock to proper diagnosis and treatment, many individuals additionally experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.
Tip: The national organization focused on raising awareness of fibromyalgia is called the National Fibromyalgia Association (NFA).
When celebrities such as Lady Gaga share their stories about medical conditions, it prompts other people to see doctors for answers to their own problems.
Film Bringing Attention to Difficult-to-Diagnose Disorders
Harvard PhD student, Jennifer Brea, chose to document her own journey figuring out her difficult-to-diagnose condition. Often confined to the isolating privacy of her own bed, she describes her body as having failed on her. The entire story is told in a new documentary film called “Unrest”.
Brea’s crusade to raise awareness through “Unrest” is gaining steam thanks to the increased attention of Gaga’s personal medical story.
She has chronic fatigue syndrome (CFS). One of the misdiagnoses the filmmaker was provided was fibromyalgia. Check out the similarities and seemingly obvious differences below.
Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)
Chronic Fatigue Syndrome (AKA myalgic encephalomyelitis) or ME/CFS is a complex, debilitating illness. Symptoms affect different parts of the body and can include mild-to-severe:
- unrefreshing sleep
- muscle and joint pain
- problems with concentration or memory
They may come and go, or they may last for weeks, months, or years. Further complicating things, symptoms can happen over time or come on suddenly.
That’s why ME/CFS may only be diagnosed officially after six months or more of extreme fatigue not improved by bed rest that may get worse after activities which use physical or mental energy.
Tip: The national organization for in-depth ME/CFS information is called the Solve ME/CFS Initiative.
It’s Not In Your Head
“It’s all in your head” and “it’s just stress” are two phrases that I’ve personally heard quite a lot. It hasn’t always been true for me, and it isn’t always true for many patients. I am so excited about the “Unrest” film and am anticipating the release date.
You are the only person who knows your body and when it feels wrong. It’s okay to see another doctor for a second opinion if you have a strong gut feeling something’s not right and/or you’re not receiving enough care. Great doctors are not intimidated by their patients’ second or even third opinions. Listen to your body.