An Open Letter Regarding Lady Gaga

I made a bad decision the other day: I decided to read the comments in an about Lady Gaga's decision to cancel the rest of her tour due to severe pain.  And let's have an honest moment where we all recognize that reading comments is often a bad idea, right?  The negative comments seems to be in three parts:

1. Fibromyalgia isn't real
2. Fibromyalgia is real, but she's a wimp/diva 
3. Fibromyalgia is being used as an excuse to do something else. 

As for #s 1 and 3, I just don't have time for these people.  What enraged me was the woman who stated that she has fibromyalgia, but still makes it to work each day and if she could do that then Lady Gaga could finish her tour.  That it was a combination of fame and money that allows Lady Gaga to play the diva and leave thousands of people in the lurch for hotels booked and flights arranged in order to see her show.  That she was being a wimp.

If there’s one thing I’ve learned about living with chronic pain is that I am in no way capable of judging anyone else’s pain.  Pain is unique and experienced differently by everyone.  I watch my 91 year old grandfather, who has had four hip replacements and one knee replacement, who has severe arthritis, who can barley move his arms or hands due to major shoulder injuries, I watch him fight for his ability to feed himself and to stay positive.  His pain is expressed in slight grumpiness or getting very quiet.  Whereas my 87 year old grandmother, who has had one hip replacement and whose other hip is bone on bone, who has arthritis and dementia, she moans and fusses and expresses her pain loudly. They are different people and express their pain differently.

I also know that chronic illness is fluid, and that it can get worse or better over time.  If I had the resources that Lady Gaga has I would happily check myself into a hospital or spa retreat during a flare.  I’d let doctors and complementary medicine specialists do their work.  I'd find out if acupuncture could help or if steam rooms improve my symptoms.  I'd work with holistic nutritionists and dieticians and understand how diet might impact me.  I'd take up that craniosacral therapist who wanted me to go on a healing retreat in the Bahamas, and have four therapists work on me at once while floating in the water ($4000 for the trip, but doesn't it sound great?!).

But I can't.  I don't have the same resources as Lady Gaga, and that's okay.  I can't imagine what her body might feel like after a performance or midway through a world tour.  I think it's wonderful that she's listening to her body and taking the necessary time for self care.  Yes, she's incredibly lucky that she has the time, money and resources available to her, but I also know that I wouldn't be able to live  the life that she leads.  If she says she is in enough pain to quit the tour, I believe her and wish I could give her a gentle hug.  And maybe a cup of tea and a cozy blanket. 

I'm thankful and inspired by how Lady Gaga has brought chronic pain and illness into the world's conversation.  I hope she knows that she an extended chronic illness family out there who believe her.  And as someone who has had family, friends, colleagues, and even doctors question the reality of her pain, I know the power that comes with knowing you're believed.