The real take-away message behind Lady Gaga’s fibromyalgia diagnosis

We may have missed the real message behind Lady Gaga’s fibromyalgia diagnosis.

News that superstar Lady Gaga has fibromyalgia has brought this still little known and often misunderstood chronic condition to the fore. The media is now widely reporting it; it is trending on social media, and people are probably finding out more about it than any other time.

I feel great sadness for her, knowing this battle, but understand too, that it will raise awareness which we so need.

When I was first diagnosed with fibromyalgia almost seven years ago, there was little information on the internet. Doctors didn’t take me seriously and I felt so lost. My health was at its worst – I needed a walking stick and taking a few steps was so painful. I got lost on the way home a number of times, hit by fibrofog. Mentally, I lived in a fog, finding it hard to concentrate on anything, or process information,  have a conversation and even stay awake, owing to the  constant wave of debilitating exhaustion. I lost jobs I loved, had to give up others. My future looked bleak.

Through lifestyle changes and constant efforts, daily, my health is alot better than it was, though I still suffer every single day. I know there’s still a long way to go. We still don’t have a cure yet, or even know the cause of fibromyalgia. There isn’t enough research happening, and people still don’t know the extent of this life-changing condition.

I have heard of concerns from the fibromyalgia community that Lady Gaga going public on her diagnosis could add to misunderstanding of this crippling condition. I read that people might think fibromyalgia isn’t as bad when they think of Lady Gaga on stage performing at shows. But I took completely different meaning.

I have long said, and still say, people living with fibromyalgia need to be empowered to take back their lives. Easier said than done, I know. Because I have walked that road too. I have had no social life, been too ill to get out of bed, stay awake or do anything meaningful. My life felt like it had ended before it started. I too, got stuck in an endless pity party that consumed me. But through my own journey, I have found that with great effort, commitment, change and resilience, we can live better lives, not confined to beds, walking sticks, isolation and emptiness. First, though, I had to overcome the biggest hurdle of all, bigger than the pain, the fatigue, the dizziness, migraines, irritable bowel syndrome, cognitive impairments… I first had to wage an internal war against myself – to break out of the mentality that it couldn’t get any better. I had to stop resigning myself to the idea that my life was over and I would never achieve all I wanted to. I had to change my rhetoric. I had to change. I had to become my biggest teacher and supporter. Challenge my own thinking, actions, ways of being and what I believed to be true. I had to confront the myriad of fears telling me that I would never make it. Only when I did that, was I able to get brave to lobby for the healthcare I needed, to call out disbelieving doctors and correct the naysayers, often, the people closest to me, and then, move onto acting on what I now believed to be the truth. The truth that not even the beast of fibromyalgia would or could conquer me. I knew it would be damn hard, but I would not go down without a fight. This is what you will have to do too.

We should see Lady Gaga as an example of a sister, fighting to find her way on the hazy road of fibromyalgia, fighting for her life, as we must do for ourselves.Nothing worth doing is ever easy, and certainly with fibromyalgia it is harder.

But I know, so I tell you, nothing is impossible. Keep fighting for your life. And in the words of my favourite song, ‘don’t dream it’s over.’

Gentle hugs 🙂

Cover image by Hawken King