Fibromyalgia…Pyramid of Resilience

The last thing I ever would have thought, as I sat in a business class decades ago, listening to a prof explain an idea in psychology known as “Maslow’s Hierarchy of Needs”, is that decades later this theory would keep creeping back into my thoughts over and over again throughout my twenty years of having fibromyalgia.

When I learned about it that day in university, it was presented as a stages in life kind of thing, a gradual steady ascent (hopefully) up the “life pyramid”, to the better things in life…that is, unless something unfortunate happens and you get knocked down again to an earlier stage.

But over the years, it keeps occurring to me, when you have fibromyalgia, it’s a monthly, weekly, sometimes daily kind of thing, getting knocked down‎! Not a life stage.

I mean, I have been continually KNOCKED BACK DOWN to BASIC SURVIVAL MODE. Working on the most basic of needs.

The bottom. Starting the ascent all over again. Often.

Real often.

So let me explain.

As you can see in the diagram, in his “Hierarchy of Needs” pyramid, American psychologist Maslow, in his 1943 paper, used the terms “physiological”, “safety”, “social”, “esteem”, and “self-actualization” to describe the stages, he theorized, through which human needs and motivations generally move. According to his theory (in a nutshell, in my understanding), the needs of each stage must be met for an individual to be motivated to move up to the next stage, starting with fulfilling the most basic of needs to live, an individual’s eventual goal proposed to be finally arriving at the top stage in life of “self-actualization”.

And moving through the stages, as I understood it, would likely be a gradual, uphill journey, on the pyramid, that we all work on in our lives. We start out as young adults, working hard to get a start in life, securing our “physiological needs” of having food, water, sleep, a roof over our heads, then our “safety” needs of security and well-being. Having those needs secured (enough) we are freed up to move up to fulfill our “social” needs with family and friends, then on to our “esteem” needs, and hopefully even achieving our full potential of “self-actualization” and happiness.

Great plan.

I vaguely remember my prof speaking about circumstances in life derailing that plan sometimes, knocking you off your ascent, down a level or two on the pyramid, and having to slowly work on moving up again, but honestly at that young age, that went in one ear and right out the other for me.

Getting derailed simply wasn’t on my radar. (Who expects THAT will happen!?)

That is, until fibromyalgia. Yes, fibromyalgia ushered in the “era of derailment” for me.

That “hierarchy of needs” pyramid that I’d been steadily climbing for a couple decades, well, let’s just say I’ve been knocked down to the bottom of it (sometimes STUCK at the bottom of it!) and started climbing back up again more times in the last two decades since my fibromyalgia diagnosis than I care to remember (if I could remember…thanks fibro fog). Yes, that old pyramid, I’ve crawled up and down, and down and up, maybe sideways at times, pretty much every which way you can go, probably even near dropped right off it a few times.

And when you’re talking fibromyalgia and getting knocked back down again, of course you can’t leave out the biggie, flares, that are always good for knocking us down a level or two…or four.

For example, maybe I’ve been doing alright for awhile, my fibromyalgia’s somewhat manageable; I’ve made it to the level where I’m actually planning a few “social” things, maybe a holiday…I’m mid level on the pyramid. Or once in awhile I’ve had an exceptionally good run; I’ve made it all the way up to “esteem” and even working on a little “self-actualization” plans in my life…I’m at the top.

Briefly.

Then boom. A flare hits. It’s immediately…as in, do not pass go, do not even finish my bit of “self-actualization” efforts…back all the way down to…basic survival again. And forget being excited about plans, about working on my life, the lofty plans and ideals are gone; I’m suddenly just pushing through life again…struggling to do the day-to-day minimum.

Back to basics.

Or rather, the ‘physiological” on Maslow’s pyramid, the bottom level, the necessities of life. Yes, I’m SIMPLY WORKING ON SURVIVAL…my health…getting enough sleep despite the pain and whatever distressing and scary symptoms this flare dreams up…reducing everything I can in my life to limit stress on my system of any sort…working hard to maintain my fibromyalgia helping routines by pushing through to keep up my exercise and diet routines in the face of immobilizing chronic fatigue.

It’s back to one day at a time. Beginning the slow work of climbing the pyramid. Again.

And everything else has to be put on hold. Again.

The fun plans, the “self-actualization” dreams, they go first, easily, they’re not really necessary. Then a certain amount of the chores, anything that can wait, it’s out of there too, put aside to continue to pile up with the years of chores I’m already behind on by now. I’m just down to pushing and dragging myself through each day to get my responsibilities done; the bare minimum to get through each day, which, for me, raising three kids with fibromyalgia still meant a long day of responsibilities, but now an extra long grueling day put in to SOMEHOW manage to just get…the MINIMUM done.

And when I say “back to basic survival” again, having fibromyalgia, we repeatedly feel, yes, our VERY SURVIVAL.

We often don’t know what we’re dealing with; our symptoms can mimic other very serious health conditions; like cancer, I’ve been through that whole series of medical appointments, and tests (and stress!), waiting to find out if I am dealing with cancer, more than once, but alas, weeks or more likely months later, it turns out, thankfully, no, it’s “just” fibromyalgia symptoms.

Yes, that’s the way fibromyalgia goes…all the way from getting a bit of a life, back down to basics…survival…again. One day at a time.

And you’d think getting knocked down a few stages in life, it would have to be some pretty big event to do that…you’d think…and it sounded like Maslow seemed to think that too…but no, not so for me and my fibromyalgia. As I’ve discussed at length in a previous post, with stress being a key trigger for my fibromyalgia symptoms, at times it doesn’t take much at all to tip me into this flare-back-to-survival territory.

I can be hanging in there fairly well managing my symptoms and getting through maybe an extra overloaded few months and then someone imposes some added responsibility on me and as I’ve explained before, “one little thing (to someone else) can be the tipping point or the straw that broke the camel’s back for me and my fibromyalgia and stress capacity…and I get sent into days, weeks or even months of a flare up that I then have to work hard to “get back” from.”

Yes, the rug can be pulled out from underneath my (fibromyalgia) pyramid pretty easily at times.

And not only with major flares…I’m often getting kicked down that pyramid on a daily basis too. Real often. Sometimes it seems pretty much at the drop of a hat.

Here’s an example I jotted down on one of these days awhile back, so typical.

“I am continually knocked back down again. Like today, a bad night’s sleep last night, up looking after my sick son; today‎ fibro fog is huge, fighting fatigue. I had a lot I wanted to get done today, some of my volunteer work, another big project I have been excited to work on (I worked hard all week getting work and the chores out of the way to clear the decks to work on this project today!), even just continuing to look after my son today. Instead, I’m knocked off my feet, back to the basics…surviving…just trying to get the necessities done through the fog, so I can hopefully still get to the “actualization” things but most likely it will get shelved until another day or best case maybe only a fraction of it accomplished with my fibro fog brain and my chronic fatigue kicking in.”

And maybe the next day’s better. Or maybe that was a tipping point…and I’m knocked down a stage or two (or four)…indefinitely. (I know you know.)

You see, having fibromyalgia, I’ve found that between dealing with a range of uncomfortable and difficult, to distressing and downright scary symptoms, and pushing through crushing chronic fatigue…WHILE keeping up healthy daily maintenance routines that help to minimize all these symptoms…AND attempting to pace of course…well, all this alone keeps a certain amount of each day busy working on fulfilling those first two levels of “physiological” and “safety” needs.

Every day, a good chunk of it is spent working hard on the first two life stages, the basics of health and well-being. Every day.

And this leaves me with maybe one third, two thirds at best on a really good day, of the time that I used to have in a day when I was a “regular” person (pre- fibromyalgia), to do anything (and everything!) else…from the necessities of work and chores to perhaps getting a little “social”, “esteem” or “self-actualization” in my life…all has to be fit into that bit of time each day. And I’m pushing and dragging myself through to get that much time!

So, if anything comes up…that “available” time’s gone. A son is sick and I’m up in the night looking after him, sleep is shot, symptoms are worse, slowing me down…that time’s gone. Someone loads some extra time-consuming responsibility on me…that time’s gone. Someone loads a pile of stress on me, symptoms worsen…that time’s gone. Even when someone wants me to attend some social event…that time’s gone. MY time’s gone. My chance to maybe get something done is gone…whether it be something I need to get done or simply would like to get done…it’s gone. I then have time only to work on my most basic of needs, the “physiological” and “safety”.

I remain…at the bottom levels, still.

Yes, living with chronic illness, I’ve found I have to continually GUARD MY TIME against everyone else who would pull me away, on a daily basis.

Because when your time is getting taken away consistently, on a daily basis, besides being forever behind on life’s day to day necessities and chores, this ultimately adds up to taking away time to work on climbing up to those higher life stages kind of things whereby hopefully, I dare dream, I would get to do the things I LIKE to do!

My day to day is unpredictable enough and hard to stick to my own schedule through all these fibromyalgia symptoms coming and going amid all the “maintenance” health routines I must practice, much less fit in anything on anyone else’s schedule. When others want me to do something, my whole day has to be rearranged and geared to be available on their schedule, and with my reduced time, that will be the one thing I was able to do that day besides all the required (fibromyalgia) self care and life responsibilities I have of my own. Each time I do make time to do something for or with someone else, I’m giving away what little chance I have, to do my own thing I needed or wanted to do; it gets put aside again.

Yes, I find others can be continually taking my life away if I don’t keep vigilant about guarding against this, consistently stand up for myself, and my valuable limited time, and basically, my chance to have a life over and above the mundane day-to-day work of keeping functional (fibromyalgia-wise) and fulfilling responsibilities.

Now, I went through years and years of this as I raised my three sons, constantly giving my precious bits of “available” time away every day to fulfill their needs and wants but I didn’t mind as much, having this happen for them. I’m a mom, it’s what I do. And I knew eventually they’d grow up and they wouldn’t have so much time for me anymore; I’d get my own time then. And now that time has come and I’m forever grateful for the time I had with my kids raising them, regardless that it meant so often living at that lowest level on the pyramid, of simply having only the time and energy for struggling to meet my basic “physiological” needs each day on top of my responsibilities.

But when it comes to others outside of my immediate family, it’s a bit of a different story. I found myself dropping more and more socializing with them many years ago, because I found that every time I made time to socialize, I lost the time for my own dreams and plans in life. I would make the time to socialize because I wanted to or felt I should, then I would return home to even more limited time to do the necessary things that I needed to do as a mom of three kids and business owner.

As the years went on, I became years and years behind on, well, everything.

So many things bit by bit fell by the wayside; I just couldn’t do what I used to do with such limited available “good” time and energy each day, that is when I even HAD “good’ time or energy…remember, a certain amount of time when you have fibromyalgia is just “survival”, trying to feel okay enough to function at the most basic level. (I know you know!)

And as the years went by, I noticed something; those people I’d taken the time to socialize with…I’d watch them fulfill their dreams, reach their “self-actualization” level as mine fell by the wayside and I struggled to get the minimum required in life done…to exist…because I had spent my only available “self-actualization” time with them. I just didn’t have the time to do both any longer.

It occurred to me, as the pandemic dragged on and I heard the “regular” people bemoaning things they couldn’t do now, going out, seeing friends, saying that’s all they’re dying to do again…distraught and depressed because their life had been largely confined to their homes, reduced to simply working on the basics of staying healthy…I realized I’d lost all they grieved long ago. The pandemic hadn’t changed much for me; I didn’t find it as difficult as they did.

It was a pandemic and all that I wanted was my health…yes, I still just wanted my health. Usually I was fighting fibromyalgia; now I was working on not getting covid too…but it’s all the same to me…spending my life working on being healthy.

Maybe getting knocked down Maslow’s pyramid a few levels like this was (unbeknownst to them likely), the first glimpse into the life of the chronically ill that many had ever had.

Not that I would wish that upon them.

No, these are very nice people I’m talking about, with very good intentions, and I suppose I’d feel bad to never be invited or included in social events. But I do have to say, it’s just my reality that whenever someone asks me to do something, it’s often making me give up my dreams, my “self-actualization” level in life, because I just don’t have the available “good” time to do both.

The “self-actualization” things are the things that are often the last thing we get to work on, after all the other necessary stuff gets done. When people load more on us, even well-intentioned nice things like socializing, the dreams get bumped out, and I’m suddenly working with less “good” time to just get the necessities and basics done again, the necessities of my life responsibilities and the basics of my health “survival” and maintaining my functionality.

I end up continually using my limited “good” time to go to their party or messenger with them or attend their function. And the only time left for me is my work time, things I have to do, IF I’m even good enough to do them and not needing extra downtime for fibromyalgia symptoms or worse yet flares. (And even when I am feeling fairly well, it’s because I AM taking the necessary time that I need to do my fitness routine, to eat healthy, to pace myself, to get the required number of hours of sleep I need each night, instead of socializing, and I need to continue to do this.)

I just have way less hours in a day to work with than “regular” people for anything more that those basic level needs.

And even when I want to socialize, it’s so hard to plan ahead, never knowing where I’ll be at any given time, on the pyramid.

There’s been many times where maybe I’ve managed to be doing better with my fibromyalgia for awhile so I’ve moved up on the pyramid and I venture to plan some “social”, “esteem” and even a bit of “self-actualization” things in my life, so I accept a social invitation…only (of course, you guessed it) to suddenly get a flare and be knocked down to basics again. Now what do I do!? I’m committed to a get-together or a holiday or something and suddenly I’m at the bottom level again; I’m back working on survival! I could care less about social events now!

So again, I KNOW they’re well-intentioned and have no idea what attending their party, or carving out a time to visit, means to me…I mean, I could be already at the bottom level working on fighting my way back up or know that I’m already teetering on the edge of a flare and that attending their party will knock me off the edge. So I’m sure I’m seen as pretty anti-social to some…but I’ve lived this for over two decades now and I’ll tell you, those people are never around to help me pick up the pieces when I’m dealing with flaring symptoms for weeks or months and postponing my life and dreams yet again, for them.

So I know people don’t understand, they may take it personally because they probably don’t realize I rarely socialize with anyone, it’s not just them…but after years of my dreams continually getting pushed farther and farther away, I think of that every time people (unknowingly) want to continue to take them away, and no, I’m guarding my dreams now, I’m keeping some time and energy for them…because frankly if I don’t…who else will!?

Yes, crawling up that pyramid and getting soundly bounced down it, over and over again, throughout two decades, yearly, monthly, weekly and especially daily, it has changed me.

It has MADE me.

I am a different person now.

I wouldn’t have chosen to have fibromyalgia, but I can’t deny I have a resolute RESILIENCE and a mental CLARITY, with which to stare down anything in life I need to, that I feel GRATEFUL for.

Yes, I feel grateful. Because I don’t feel weaker for having fibromyalgia. I feel stronger, so much stronger. I’m not afraid of getting knocked down the pyramid again; having fibromyalgia, I expect I will. BUT I HAVE CONFIDENCE IN MY RESILIENCE.

Resilience.

If I would have one wish for others with fibromyalgia, it would be that they recognize their resilience, and that they have confidence in their resilience.

Because what I know is real is that climbing that pyramid over and over again, in big weekly overcoming-flare ways, in little daily getting-out-of-bed ways, there’s only one word for it…resilience. For those of us with fibromyalgia it’s a pyramid of…resilience. If you have fibromyalgia, you have it.

I know it.

I hope you know it.