Welcome to the Spoonie Community, Lady Gaga
I’ve always admire Lady Gaga – but I have to admit I’m not her biggest fan. I know a couple of songs, but I’ve always find fascinating how she is true to herself and encourages others to be true to themselves too.
I think and believe that she has changed the lives of many people, especially neglected and bullied teenagers, by making them feel comfortable on their own skin. Through her music, her wardrobe stravaganzza, and her empowering messages, she has created a community of people who are proud of themselves after years of self-hate and denial. She’s kind of a mental health activist, and educator, without meaning to be so, through her lyrics and statements.
For that, she’ll always have my respect.
But this week it came to my ears and eyes that a lot of tabloids and comments were talking about her health. I knew she had a chronic condition, but there’s such a variety that even though I felt compassionate and identified with her, I had no precision. And one day, there it was. Lady Gaga has fibromyalgia.
I’ve battled fibromyalgia for six years now, and it has been a tough road. Not only because of what it implies for me as a patient to deal with all the symptoms, but because of the lack of information and education. It’s such a complex condition, but no one has any idea about it.
Every now and then I hear, “Stop blaming everything on fibromyalgia.” And it’s terribly frustrating for me because fibromyalgia’s symptoms are in the wide range from psychological issues and brain fog, until stiffness, bruises, and muscular weakness. So yes, I blame it on fibromyalgia because it is a damn complex illness which manages to affect every single part of me.
I’ll be a psychologist in a few months, so I’ve been through way too many conversations and seminars about how fibromyalgia is the “psychosomatic disease by excellence,” and how all of us who have it “are repressing and don’t know how to express emotions.” And the point is that I don’t care if that is true or not.
I’ve been to the ER a couple of times for horrible fibromyalgia pains. When they ran all the tests and saw that it wasn’t a heart attack or a fracture, but ribcage pain from fibro, they just lowered my status to “psychosomatic.” They gave me a few pain killers, brought the on-call psychiatrist and the conclusion was that I need to lower my stress levels. Don’t they think I know that? But then I wasn’t an emergency anymore, and I spent hours at the ER, because it’s somatic… so I just had to deal with it, have patience and keep smiling while people looked at me like I was making it up.
And it’s real. And it gets me.
Once I got into a car crash because my leg stopped working… and bam. I went directly into the front car bumper. The driver, in this rage and looking me like I was the dorkiest, most unable human behind a wheel, asked me, “What the hell is going on?” In tears, I told him, “Sorry, my leg stopped working because I have an illness.” God knows I had to pay for that. And for the lack of comprehension of friends and family and dates who don’t get why I’m so “lazy,” why I’m always tired, why I cancel plans, why I sleep for 14 hours and wake up feeling unrested, why I use a cane, why I cover my body.
So there I was, reading tabloids that said, “What is fibromyalgia? Lady Gaga’s hard disease,” “Lady Gaga’s uncurable disease.” There were also comments saying, “Wow, it seems terrible and awful. I fell sorry for her.” And I couldn’t help but laugh at first, because there are so many advocates who’ve been trying to do that for years, but none of us are famous.
So yes, people make fun and tell me if I have Lady Gaga’s illness, and I laugh. I see it becoming a trendy disease, a famous topic and it’s weird. But I thank her because of her courage of accepting the disease and making people, because of mere interest or morbid curiosity, to find out and educate what the hell fibromyalgia is, and that it’s real. That it can affect anybody, and it does affect a lot of us. That it made her cancel her tour, as it makes me cancel plans or skip classes. That it brings depression, and anxiety and this horrid brain fog.
Thank you Lady Gaga, for staying true to who you are, even if that means accepting a diagnose not everyone will understand. Thank you for what you are doing in terms of education and awareness to our community.
We welcome you, our dear spoonie, with our painful and bruised arms wide open.
We love, support, and understand you. May we all have a brighter future ahead.
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Photo courtesy of Lady Gaga’s Facebook page