You may not know this or even realize it, but you are not alone in dealing with fibromyalgia and being a fibro parent. Whatever you are experiencing at this exact moment in your life – someone else is living it, going to live it, or has already lived it. Each and every feeling you have as a fibromyalgia thriver, someone else shares your feelings. Yes, during those moments of pain, anguish, confusion, anxiety, and on and on – I’ve been there. We’ve been there. Someone has been there. It doesn’t feel that way. I know that. But read this slowly – YOU ARE NOT ALONE.
A Lonely Day
I remember one of the loneliest days I’ve ever experienced as a fibro parent. Five years ago on an unusually warm day for the time of year, the kids and I were itching to get outside. We had spent the previous few days climbing the walls from boredom, and the warmer weather was the perfect invitation we needed to stretch our legs at a popular playground not too far into town.
Once at the playground, my kids and I climbed the rock wall, played hide-and-seek on the castle fort, and took turns on the swings. We played a game of tag in the open field and explored the peculiar water fountain located not too far from the park. My face hurt from smiling and laughing time and again with my kids and the memories we were creating together. It seemed to be the perfect day.
Little did I know, reality was about to hit me full force.
Being on the Sidelines
About an hour after arriving at the park, I took a much-needed break and sat on a bench. As I continued to watch my kids run and play, all the pain stemming from my physical effort came slamming into me at once. My legs felt like lead, my back tingled with a dull throb, my feet were swollen, and my hands could barely close. My knee joints felt like two stones being rubbed together. My shoulders had sharp stabs of pain, my head pounded from the bright light, and my ears were ringing from the outdoor noises.
I looked around at the other moms, dads, and caregivers. They were all smiling and making memories with their little ones just as I was doing. But they weren’t in pain like I was. They didn’t have to take numerous breaks on the sidelines and have their kids ask why. They were living life, plain and simple. And I was jealous. And lonely. And sad. And, by the way – did I mention the pain?
Isolation of Pain and Suffering
The thing about living with chronic pain is that even in a crowded room – filled with our loved ones – we still feel lonely and sad at times. And it’s in this loneliness that we start to disconnect. We disconnect from our life, our family, and all the other stuff that matters to us. That severed connection leads to isolation which, in turn, fuels our pain and suffering. It’s a vicious cycle that is, unfortunately, the reality many of us live in.
The thing about living with chronic pain is that even in a crowded room we still feel lonely and sad at times.
On that park bench surrounded by the laughter of my four amazing kids on the most beautiful day I could remember, I felt that isolation of pain and suffering. It was as though a darkened frosted box was placed over me, and while I could see my kids playing, I was alone. ‘Why me?’ echoed off the walls in my head, but confusion and distortion were the only answers.
As my kids came running towards me after what seemed only a second later, I decided to intercept their prodding questions by running towards the playground. They immediately chased after me picking up where we had left off. I knew another round of playing would keep the questions they had at bay. After all, what answers could I give them? My body was screaming in pain, yet I did not stop. I kept running, climbing, and exploring. I kept smiling and creating those memories. I was determined not to ruin the moment for them despite the pain that would wreak havoc on my body later.
Others Just Like Me
This was during a time before my diagnosis of fibromyalgia. I didn’t know that my pain had a name and there was a reason I was experiencing it. More importantly, there were others just like me with the same thoughts, experiences, and pains. And while I felt lonely on that bench with my suffering, I was not alone. Statistically, there was at least one other person on that playground that had fibromyalgia. I just didn’t know because fibro does not have a distinguishing mark of some sort. It stays well hidden, for the most part, in our bodies with manifestations every now and again.
How did I arrive at the conclusion that I wasn’t alone in this struggle?
After reaching a breaking point during that same year, I was determined to confess all my feelings to my physician. We were still getting to know one another as I was a new patient of hers, but something told me I could trust her. Looking back, I’m so thankful I did. After I told her of my pain through tears of mixed emotions, she informed me that I was not alone. Not only were there millions of others experiencing the exact feelings, but she, too, had been there. I cannot begin to explain the relief I felt. The mixture of emotions and tears came again, but the confusion, desperation, and isolation were replaced with relief, joy, and reality.
The vicious cycle of disconnecting from others which fuels pain and suffering is the reality many of those with fibromyalgia live.
Millions of Others with the Same Feelings
Yes, tears of joy and relief. Not something many would celebrate when being told they will live with a chronic syndrome that has no cure for the rest of their days. I was focused on the portions that resonated before the reality of diagnosis set in –
millions of others
same experiences and feelings
There were others, just like me, that were going through what I was going through at that moment. They, too, felt alone and isolated with their pain. And not just a few others – millions of others. And those are the ones that were diagnosed. Who knows how many people are out there living with the same syndrome that is not diagnosed? These are my people. They get me. We have a bond. And again – I wasn’t alone. What an impacting difference that small piece of information had made in my life. Things were going to get better. In fact, at that moment, they had already improved.
I wish I would have listened to my body and just rested more frequently on the bench as well as at many other times in my past. Making memories didn’t have to be an all-out war on my body. Memories could have been made in other ways, and well within my physical limits. But I was afraid of disappointing my kids and letting my body stop me from doing what I wanted to do. I figured I would just ‘suck it up’ as one physician so eagerly told me in years past, and join the other seemingly happy parents. Smiling through the pain wasn’t a first, and it definitely wasn’t going to be the last time.
How to Get Support
I can recollect not too long ago when we lost someone in the fibromyalgia community to suicide. It was absolutely heartbreaking to think the pain and suffering were too great to bear anymore. I think of this whenever I share my story of living with fibromyalgia. Each person is different, to this, I’m not naive, but I do believe that by sharing my experiences I am, in some way, helping someone else.
It is dangerous to keep your feelings to yourself. Share your feelings with someone – anyone – in some way.
You could send a private message, anonymous email, anonymous comment, or anonymous letter. No matter what you may think, you are not alone in your feelings. There are others suffering and they, too, are scared of sharing. But you know what? You have to start somewhere. And taking that first step is the hardest, I know, but it will get easier. Each step is easier than the last even when you take a step backward and you will take backward steps down the path of healing. Because each step brings us a new experience in which we will learn something even if it’s an underwhelming experience.
What has living with fibromyalgia taught me?
This article was originally published in the January 2017 edition of The Fibromyalgia Magazine.
Fibro Parenting Group
