Life with fibro is hard. It’s not just the myriad symptoms which can occur at any time of the day or night, but one of the cruellest things is the prejudice we often have to deal with from others just because ours is an invisible condition. Some folks seem incapable of grasping what that means, often believing the folks with the condition are lazy, hypochondriacs or fakes rather than actually being ill.
So here are four things that I wish non-fibro folks would understand about the condition.
1 – Fibro Pain is Real
I often wish that I had some kind of built-in pain indicator display, so that it would be clear to others how much I’m hurting. But it’s so hard when nobody can see your pain and scans of affected areas come back clear because the causes of our pain aren’t visible. Sure, the type of pain we experience day to day might differ, sometimes burning, sometimes stabbing, sometimes like an electric shock, but it’s always real.
Typing this, I feel like someone is winding a corkscrew into the right side of my spine. I keep having to stop typing to get up, stretch and relieve the pain just a little. It’s every bit as excruciating as an acute pain resulting from an injury, and I’ve had plenty of those. Of course to look at me, you’d have no idea of any of this. But just because something is invisible doesn’t mean that it doesn’t exist.
2 – Because I can do something today doesn’t mean that I could’ve done it yesterday or that I could do it again tomorrow
Part of living with fibro is having to plan your life so that you don’t overdo things and end up in a world of pain. For me, this means looking ahead at what I need to do in a week and making sure that I factor in time to do the daily exercises I need to keep moving (this is non-negotiable) and plenty of rest periods between each errand, task or outing. But people often just don’t get this. All they see is the fact that something, whatever that something is, gets done.
Here’s an example of what I mean… I recently had to undertake a long drive, which is something I very rarely do these days due to a combination of pain and fatigue as I just don’t feel safe to drive. En route, I had to stop at every motorway service station to stretch and take a break. I rested the whole day the day before the journey and planned to do so the day after. This was the only way that I could even contemplate undertaking this and even then, my pain levels were off the scale as a result.
When I finally made it to my destination, I happened to overhear one of my relatives talking to someone else about me having been able to complete the drive “Isn’t it amazing what she can do when she tries…?” The person making the comment had no idea how much planning had gone into the drive, how many times I’d had to stop en route just to be able to keep going, how much rest I’d had to take beforehand and how much pain I was actually in because of having done it. For me, the drive was a real one-off, not for the want of “trying” as my relative so beautifully put it, but because it had taken an enormous amount out of me.
All too often, though, people make assumptions about our capabilities and have no comprehension of what we go through in order to undertake something which others could do without a second thought.
3 – Fibro Folks Aren’t Lazy
Dealing with chronic pain, fatigue and the long list of other fibro symptoms is tiring in itself. Some days, just getting up, washed and dressed is enough and feels like a hard won battle. These days are called my “slow days” and are the result of how my energy and pain levels can fluctuate. This doesn’t mean I am lazy, it means I have a condition which varies in symptoms and severity each day.
I find that people who have no experience of chronic illness are often unfamiliar with core concept of pacing. As a result, if we have to break a task down into manageable chunks punctuated by rest breaks order to complete it, we can be seen as lazy for not just getting on with it. But successful pacing depends upon stopping and taking a break before we reach the limit of our capabilities. Ploughing on without listening to our bodies to complete something can result in us being bedridden with pain and fatigue afterwards and in the long run, we end up doing less.
So rest breaks and not overcommitting are integral parts of managing a chronic illness, not laziness.
4 – What helps some people will not necessarily help others
Since having fibro, I’ve had all manner of unsolicited advice about so and so who has tried x, y and z and been miraculously cured. The insinuation here being that all I need to do to resolve my health issues is to follow suit. But as fibro is such an individual condition with different symptoms, there is no one-size-fits-all approach to manage the condition.
I spent years working with my GP cycling through different medication until I finally found a combination that didn’t make me feel even worse due to side effects. Nowadays, I manage my symptoms as best I can using a combination of medication, meditation, swimming, yoga and walking. Does this mean it will work for the next person? No. Probably not.
Helpful advice is great and I have tried the suggestions of others, some have worked, some have made things worse for me. The bottom line is that each person’s health journey is unique, we know our own bodies best and it’s a gross oversimplification to think that one one tip or lifestyle tweak will cure us.
It seems to me that fibro is often misunderstood by outsiders who can often jump to ill informed conclusions about the illness. Taking some time to understand the condition and showing some compassion to those suffering from it would be a good first step in raising awareness of what fibro is, and is not.