‘Sup folks? It’s me, Kenon. I’m back for another exciting rendition of “What anecdotal thing in my life is useful to other people?” Today I’m addressing something that affects my marriage: the big F-word… Fibromyalgia.
For those of you who do not know fibromyalgia, or fibro as it’s commonly called, is a chronic pain condition that affects a person’s muscles and joints. It is often accompanied by fatigue and a host of other co-morbid conditions that are too long to list. Let’s put it this way… No one wants it and no one wants to wish it on their worst enemy. There’s no known cause, direct test, or any cure. It is just. simply. managed.
Now take an unknown, incurable, painful condition and layer that on top of a relationship that society deems as the pinnacle of human life. (Think of the pressure that puts single people. Geez Louise… That’s a whole other post.) It makes for an interesting dynamic within the marital relationship and ultimately leads to multiple uses of the f-word beyond what I’ve stated.
Impact of Fibromyalgia
Thankfully, this doesn’t impact me in any way. Oh, wait… Pardon my French but, “Ne sois pas ridicule!. Fibromyalgia, not only creates issues for my spouse, but also issues for me. How can someone take all of the seemingly normal marriage expectations and put them on a person whose day-to-day physical and mental condition is in flux? Seems unfair, right?! Well, guess what. I still tend to do that regardless of fairness.
This has led to multiple conversations between my wife and I. Some of them even ending in tears because I simply can “never understand what it’s like.” I admit, she’s right. I will never know what having days where my body and mind wage war with each other over whether or not I can get out of bed, or what it’s like to have a doctor tell me, “We’re out of options. I don’t know what to do next.” I’ll also never know what it’s personally like to have someone tell me, “You look fine. It just has to be in your head.”
Here’s what I do know: how seeing her frustrated makes me feel, how helpless I feel that there’s nothing I can do to fix it, and I know that it’s easy for me to blame things on her when in reality I need to pull the plank out of my own eye before pointing out the speck in hers. I’ve got my own stuff to deal with too. I’ve been diagnosed with a general mood disorder (a.k.a I’ve got depression/anxiety but have only seen a GP about it.) When blaming her for my feelings, I was unable to deal with myself. I couldn’t see or admit that I had my own junk. Only within the past year and a half have I taken a self-inventory of motivations, desires, and goals in order to become more self-aware. It turns out I was letting bitterness grow and because of that I tried to mask it by putting the onus on her to meet my expectations and fix my problems.
Man, I can be dumb sometimes.
(Not really) Coping
In the beginning stages of finally addressing myself, I used social media and queried a private Facebook group I participate in. I typed “Fibromyalgia” into the search bar, said a quick prayer, and hit Enter. Lo and behold the 1s and 0s that traveled though multiple servers and were processed by who knows how many databases finally gave me the answer I was looking for: I was not alone. For so long I built a wall between my wife and I which resulted in my perceived loneliness. Yet this simple query yielded the name of someone who could relate to me. I sobbed.
After releasing my emotions, I gathered my wits and sent a message to my (unbeknownst to him) newfound kindred spirit. I wrote:
Hey man. Just wanted to introduce myself and let you know that you are the sole person who shows up…when I search for “fibromyalgia”. (Lucky you, right?!) Well, we find ourselves in the same situation: married to lovely people who suffer from a frustratingly sh*#&! condition… I can relate to the frustrations, anger, guilt, and helplessness that can creep into our lives as fibro husbands.
I’m currently dealing with such feelings…Hope all is well and if you are ever in need of a brother to vent to or need someone to lift your family up in prayer, I’m available.
My new fi-Bro (see what I did there) wrote back quickly. He let me know that, indeed, we could relate and that I wasn’t alone. We had several conversations and I even ended up having a conversation with his wife. In that conversation she said something that I’ll never forget. “Some days your wife’s 100% will not be the same as her 100% on other days.” ::insert record scratch, lightbulb turning on, and Eureka!:: Unfairly, I had put an expectation on her that just because one day she could do Activity A without any issue doesn’t mean on another day Activity A will even happen, let alone be done to the same extent.
One last tool that helps explain the day-to-day change of energy levels is called the Spoon Theory. It simply states that a person has a set number of energy units, metaphorically called spoons, that they can spend throughout the day. Persons with chronic illnesses, like Fibromyalgia, Lupus, IBD, or Rheumatoid Arthritis, usually need to use more spoons to complete a task. So, for example, if an able-bodied healthy person uses 1 spoon to shower, someone with a chronic condition may have to use 3 spoons to do the same task. They may even have a lesser amount of spoons to begin with that day. It depends if they are dealing with a flare up of their condition. Shout out to all the “spoonies” out there because y’all are warriors. Respect.
How ’bout Now?
Well, like any human being, I still forget sometimes. However, my cognizance has definitely improved. I’m much quicker to realize I’m being an idiot and to give some grace where it’s needed. Thankfully, when both parties leave room for faults, spur each other on to become better, and agree that marriage is worth it, there will be less need for the F-word to interfere.