2 Reasons Why Fibromyalgia Can Be Confusing

My water bottle stared me down. I won’t lie. I was intimidated.

Tears stung my eyes. How could just the thought of filling a water bottle overwhelm and exhaust me? I mean, how ridiculous is that?!

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

On many days this simple chore wouldn’t beat me down, although my muscles and mind alike would
still subconsciously note the energy it would take to complete the task. Ever fluctuating limits dictate what can be accomplished each day. (This is a perfect example of the spoonie theory in action – with a limited amount of spoons given to me in a day, how many will filling a water bottle take from the total, because once they’re gone they’re gone.)

Just days before, I had posted a Facebook picture of myself climbing over a wooden fence and into a pasture, because I saw a dead tree in the distance and saw it as a fun photo opportunity. I didn’t walk far and was definitely out of breath from the “climb,” but I did
it, and I got some fabulous (outrageous) pictures. It was a good moment and I seized it.

I get it. Chronic illness is confusing, fibromyalgia in particular.

With type 1 diabetes since the age of 9, and a collection of disease such as fibromyalgia, hashimotos, and gastroparesis to name a few, I’ve got some challenges — invisible challenges. And they all ebb and flow.

“Susie, you travel and pose in front of naked statues and climb fences and yet you say you can barely take a shower some days?”

Correct.

You don’t often see pictures of me not taking a shower. Those would be disturbing at best. What you see are the pictures of me seizing a moment. And it might be one good moment surrounded by a thousand difficult
ones. It might even be hard in that moment, but I am pushing through and enjoying life within the pain and fatigue. Or, it might be a really good day or week and I feel “Susie good.” (It only makes sense to measure good and bad against my own symptoms, as I am never symptom free. But I’ll take “Susie good” and be especially thankful for those days.)

So, as that empty reusable water bottle stared me down knowing I needed him to take my fibromyalgia medication, the thought alone of getting out of bed to fill it was more than I had in me.

And then it struck me.

There are more reasons than just seemingly conflicting social media posts that confuse the healthy person, when it comes to invisible illness. First of all, and this is probably not a new thought to most, but the healthy have never experienced it. How could this person possible “get” the ups and downs of chronic illness, when even we are confused by why today, or I thought I had paced myself, or was it something I ate or maybe it’s the underlying stress of my mom’s Parkinson’s diagnosis?

So if they’ve never experienced chronic illness, and the chronically ill have a hard time explaining why up, why down and why now? Then how could the healthy possibly understand?

Second — and this is what my water bottle told me in the stare down — as rampant as chronic illness is (approximately 22 percent of people in the United Kingdom have some kind of ongoing illness, according to the King’s Fund), how many healthy people are well connected to those that are ill? I’m sure everyone could say they know of someone with chronic illness, but how many intimately know the ins and outs of the everyday life of someone who suffers?

I have met so many new people in online support groups, and found communities such as The Mighty and GIFTuk, who help normalize chronic illness for me. When in those group chats I say, “I couldn’t do my hair today because my arms were not strong enough to hold the curling wand,” the response is, “I so get it. I haven’t changed my sheets in weeks (months?) because I’ve been too weak to strip the bed.” No one blinks an eye.

But try saying those things to someone who’s never encountered someone with ongoing disease (or at
least didn’t know it), and they might nod as their eyes go blank, or they laugh thinking you are joking. And why not? How can they know that climbing the
stairs to your bed could mean you are too fatigued to undress so you just climb in and sleep clothed — and it’s only 1 p.m. Imagine your friend calls you on their way home from the gym and after hearing how their workout went, you tell them you didn’t have the strength to take your socks off? It probably seems
ludicrous to them. They aren’t in the chronic illness chat groups where this might be the norm. And this honestly makes me happy. It means they aren’t
suffering.

So I guess that water bottle gave me a tiny epiphany as to why people don’t always act supportive, and as much as I want to feel understood, I wouldn’t wish sickness on anyone.

So, lack of experience and a contrasted view of normal are probably valid reasons for people to not understand invisible illness. Although some people seem to have compassion even without understanding, (and I thank
you!) this might be too much to expect from everyone.

But, I will say this:

I don’t think they are valid reasons for not being believed.

Too many people with invisible illness feel alienated from society, mistrusted in the medical system
and exhausted from feeling the need to convince friends and family that the struggle is real. Sadly, I see this in my chronically friends much too often.

So, if you have chronic illness, I hope you find a community and the support you need to feel understood.

If you don’t have chronic illness and encounter someone who does, the most important thing you
can do, even if you don’t understand us, is believe
us.

Trust me. No one wants to look at an empty water bottle and cry.