I’ll have to divide this post into two parts otherwise it will be incredibly long, but both fall under this concept of having lost our voice at some point along this journey, or at least, struggling to be heard and understood by our peers, friends and family. A while back, when I started this blog, I wanted this to be a space where my fibro peers would have a place where they could write in and share. That it was not only my experience that was heard. I think that hearing from more than just one person, whilst it should not be this way, lends more validity and credibility to the fact that this is a very real syndrome and that whilst every experience is unique and different in it’s own way, that there are many commonalities from one story to the next. In the first part of this blog, we will hear from a friend of mine that I have known for more than half my life and her experience with fibromyalgia. The second part of this blog, touches on the idea of birth trauma-something that I personally had experienced and the way that my own perceived lack of voice at that time shaped and influenced my own journey with fibromyalgia.
Our worlds are saturated with the use of technology and with this also comes a number of social media platforms and it’s huge amount of associated content. If you were to go looking on platforms such as Instagram and Facebook, you would find no shortage of groups, memes, blogs and articles dedicated to fibro. If you wanted to find something considered more “credible” in terms of research criteria about fibromyalgia, there are countless journal articles and studies uploaded onto the internet each day. However, unless something directly affects us (whether that’s something we are going through personally or someone close to us is), we often don’t go looking. Until I got fibromyalgia, I had never even heard of it and I worked in a health-related field! Since the onset of my symptoms, about six and a half years ago, I have come to know about five others in my friendship or family circles who are suspected to have or have actually been diagnosed with fibromyalgia. My own openness about my condition, has meant that they have felt comfortable approaching me, to emotionally download and hash out some strategies on how to try and manage this condition. And I don’t think that they will be the last to approach me nor the last in my circle to be affected by fibromyalgia.
One of the most common complaints I have heard from my fibro peers (and this comes from a wider network than my fibro friends or family members) is that people around them haven’t taken the time to understand their own individual experiences. They might dismiss or minimise their worries, telling them that they’ll be “alright”, offer inappropriate (though well-intentioned) strategies on how to manage it (“take up yoga” or “lose some weight”) or gaslight them by telling them “it’s all in their heads.” There are others that just don’t know what to do, even though they love you and want to support you. You name it, I’ve heard or read most of them, as recounted by my fibro peers. But, when we come together in a collective voice, well, I think that’s where we can reclaim some of our power. How can we ignore the voices and experiences of millions of people worldwide and dismiss them? This is a very real issue, that demands more attention, more awareness and understanding, and more research and funding.
To give you some context on my friend-she was a very different build and makeup to me. I have known her since my mid-teens and she was always very physically active and robust. She was very outgoing and well, I actually think of her as a bit of a “boss lady.” She always seemed so strong, so confident. She grew up playing lots of sport-swimming, tennis, touch football and first grade netball (in stark comparison to the fourth grade team I played with. We won only one game over the years we played) Her onset, unlike mine, seems more unclear and more gradual. She often felt she had reason for the pain, due to the amount of sport she played, so it wasn’t until about 8-9 years ago that she noticed it as anything different to that. It did (like mine) appear more apparent after childbirth. The brain fog though was noticed earlier than that (about 10-12 years ago). Below are her words, which are so powerful.
“Fibro. What do you say about this invisible energy-sucker?? Here is what I have been wanting to scream from the roof top! This shit hurts! A lot! Everyday is different and every morning you get up wondering if it’s a good pain day or a bad one. The minute you open your eyes and move, you already know. Then you swing your feet out of the bed onto the floor and stand up….that’s when you really know.
The pain shoots up through your legs like you have been run over by a semi-trailer…like the bones in your legs are broken, yet you still have to walk on them.
Your arms ache like you have been doing weight training with Dwayne Johnson. It’s not like a muscle ache though, it’s a bone ache. It’s deep! It’s constant and it hurts.
Everyday you put on your smile like it’s a superhero outfit so no-one really knows what is going on underneath. There is no point whinging about it as it won’t change anything. It just brings the people around you down, because they feel helpless. They can’t take away your pain. They can’t fix it. They may even hug you, which is what you really want, just minus the pain of someone touching you. You put on the mask for your kids, your family, your friends….the world.
The brain fog and the fatigue is a whole different level. It’s like you have had a massive night on cheap champagne and have the hangover of a lifetime. Not just a normal hang over, but the one that makes you never want to go near that type of alcohol again (some people will know what I mean, when I say tequila!) Your words don’t come out, you can’t remember what you were trying to say or why your brain and mouth aren’t connecting!
You struggle to make decisions because it’s exhausting. You just want to be normal again! You would do anything or pay anything to be normal! I spent over $30,000 on specialists, medication, health hacks…I found out a lot, but never felt like anyone knew a complete fix! It freaking sucks! I wanted a refund on my body!
I don’t remember always being like this (fibro also affects my memory, so….) It became really apparent for me after my son was born seven years ago. My pregnancy was normal…I did have a car accident at 36 weeks which was pretty scary! Five car pileup with my car taking the brunt of it! Luckily, my son was safe and I was just heavily battered and bruised with a side of whiplash. I always put my pain down to this…..
When it came to birthing my beautiful boy, it was a water-birth and although long, was an amazing experience. Who knew 72 hours in labour wasn’t normal!
After the birth I was sore, like I had run a marathon, but thought this was also normal! The body aches lasted for…well, I still have them! I didn’t realise it wasn’t normal until I met some amazing women at mother’s group. I remember having a chat with them asking if they had recovered from their birth and the said, yes, it took a few months…wow! I was two years in and still struggling.
That’s when my journey started…why I was feeling so crap! Hello fibro!
What helps me cope now? Juicing and cleaning days, infrared saunas. Sleep (this doesn’t help with the fatigue but seems to give me a break from the pain!), meditation and being near the water (it’s my happy place.)”
Even typing that out, with perhaps more insight into her experience than most, I was tearing up. I am so grateful she was able to share with us. Please feel free to comment if you would like to share anything about your own experience with fibro, or if something in this post has resonated with you.
Thanks for reading (as always!) Catch you on the next post.
xxx Jen – The Girl on Fire.
Hi! I’m Jen the Girl on Fire. Diagnosed with fibromyalgia in 2016, I started this blog as a way to raise awareness about fibro, share helpful tips and tricks and to allow others around me a space to contribute and share their own experiences with this condition. I am a mum, a wife, a singing and dancing enthusiast and fibro blogger, working hard to achieve new dreams despite a chronic condition.