Truths People With Fibromyalgia Wish Others Understood
People with fibromyalgia describe what they wish others understood about having their chronic illness.
People with painsomnia share what they wish others knew about the condition and how they can support them.
There are days when I can’t seem to do much more than crawl out of bed. Fibromyalgia causes widespread musculoskeletal pain, fatigue, memory issues and, in general, is a pain in the butt. When I run out of or don’t take my medication, it feels like a deep fog has settled over me and it’s difficult to find my way out.
Despite all of this, there are some things I can be thankful for this year as someone with fibromyalgia.
1. I have become more empathetic toward others.
People often make assumptions about “lazy” people who can’t seem to get their life together, but I wonder how many people silently experience challenges from fibromyalgia and just need someone to say, “I get it. I get you.”
2. My medication works pretty well.
I know it works because when I don’t take it, the pain and fatigue become almost unbearable. I’m thankful — although there is no cure for fibromyalgia — that there are options for helping relieve the symptoms.
3. I learned that I’m not alone.
I used to think no one understood what I am going through, but as I open up and talk more about it, I’ve found several people around me who also have fibromyalgia. I cannot emphasize enough how important it is to find your tribe. As the song goes, “We all need somebody to lean on …”
4. My doctor really listens to me.
It took me almost two years to find a good doctor, but once I started talking to people around me about it, I learned about a doctor in my area who really knows how to treat fibromyalgia. A good bedside manner and knowledge of how to help patients are the two most important qualities in a good doctor. Mine has both.
5. I’ve got a supportive husband.
So sometimes he gets tired of me being tired, but most of the time, he does what I can’t do and doesn’t complain about it. He doesn’t fully understand what I’m going through because he’s never felt what I feel, but he tries. Without a good support system, fibromyalgia can really create some problems. Thank goodness I’ve got support.
Yes, fibromyalgia is painful, exhausting and challenging to cope with, but if I’ve learned anything over the past year, it’s that it’s important to open up to people about it. Not everyone will understand and there will be people who still think it’s fake even though it’s a valid medical diagnosis, but you’ll find more people are willing to listen than you think, and you just might find other people who also have fibromyalgia. And, if nothing else, you can come here for support.
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Like countless millions of others, I, too, participate in that annual rite known as New Year’s resolutions. As someone grappling with fibromyalgia, I had a mixed bag of results in 2016. But I fervently believe the diagnosis drives home the need to have resolutions for 2017 — and to set them appropriately.
I’ve found it helpful to compose less dramatic resolutions and instead use the declarations as a way to state my priorities and direction for the year. More recently, I’ve also begun shaping them to allow for different versions and degrees of success.
In thinking about the upcoming year and factoring in the impact of fibromyalgia, I believe I see several general areas around which to craft my personal 2017 goals: health, relationships, creativity, growth and figurative or literal “house-cleaning.”
For me, my health and fibromyalgia diagnosis are completely intertwined right now. But I have to acknowledge the improbability of going from notably impaired daily functioning to returning to arduous backpacking excursions off the grid or multi-day mountain biking road trips.
I think the reality of the condition and treatments, and the newness of my diagnosis, require my focus to be focused an improved understanding of how to manage my condition. By building upon the limited exercise I could muster late in 2016 and experimenting with other supports such as massage, meditation and so on, I should be able to slog through the daily grind and end the year with improved health and better knowledge of how to manage it. This goal meets my criteria of layers of success and flexibility and underscores that the year is just truly about effort and learning.
Fibromyalgia affected not just me but those around me for nearly the past three years. As such, a second general goal revolves around learning my physical limits for the current ways I bond with friends and family. It also seeks new ways to connect with loved ones. Again, this will require experimenting. But the only way to discover new limits is to try and then assess; the only way to develop new avenues for creating shared memories is to risk a bad time in order to revel in a good experience. Whether we attempt some grand international vacation or merely check out a museum we’ve never visited is irrelevant. The priority is on partnering with those close to me to see how we can continue sharing our lives.
I long ago learned I need creative outlets for my emotional well-being, and I chafe without those releases. The previous iteration of my life was wonderfully integrated. But my chronic condition led everything to unravel and left me rudderless.
This past year’s creative goal emphasized trying new creative expressions on for size. For this upcoming year, I can build upon that effort and see goals that my condition no longer disrupts. All of the experiments I’m conducting create fertile ground to return to writing. Having enjoyed dabbling in photography, I can easily build an inventory to accompany my writing.
I also resumed playing the guitar. After years of near-dormancy, it caused some elbow pain, but I learned ways to mitigate it and still enjoy playing. So these focused efforts will cover the creative spectrum: written, visual and auditory. In that sense, I don’t care if one of them ends up a dead end as long as I give each an earnest shot. If so, I believe I’ll both manage my stress and find a creative release.
A goal that dovetails with my prior ones is to push myself to evolve — to return to some of my prior activities to acknowledge my new limitations and to see if such versions of those activities are fulfilling.
In addition, I want to force myself to participate in completely new adventures that from the beginning appear likely to work within my new constraints. Much of my reading on fibromyalgia has seemed to present a push-pull conflict between returning to your old self so that the condition doesn’t “win” and finding new ways to live positively so that you aren’t bound by your condition. I see my focus this year as going down both avenues, so that neither artificially precludes the other’s chances for fulfillment. The reality is that we’re all always morphing, and the real point of this goal is spending this year seeding my life with varied opportunities in the hopes that I yield some sort of benefit this year and position myself for better harvests in future years.
Lastly, I have my tedious but necessary goal around “house-cleaning.” No one loves updating wills, working with financial planners, mucking out gutters, cleaning out the attic and the like. As I learned this past year, pushing hard and ignoring my body’s warning signs can lead to physically painful setbacks. Yet, these tasks are necessary evils for keeping affairs in order and avoiding more stressful alternatives that might otherwise arise. Therefore, laying out my priorities at the beginning of the year allows me to chip away at a necessary but boring goal and to avoid distractions, disregard or deterioration.
I think the combination of physical and emotional well-being, staying connected with those around me, growing as a person and tending to some loose ends constitutes a well-rounded, achievable set of goals for the new year. It addresses ways in which I experienced setbacks in preceding years due to my condition. It builds upon efforts or learnings from my current goals that are now winding down.
These days, I’m often easily frustrated and sometimes pessimistic about my future. But this goal-setting is also a self-managing way to see positive outcomes. In their details, each goal also allows for degrees of success, since all-or-nothing outcomes are needlessly punitive and would only reinforce the frustrations I’m battling to overcome. I’ll commit these goals to paper and update them at least monthly. Doing so helps maintain my focus and positive outlook. It will also help me acknowledge small successes along the way.
Like everyone else, I want to live vibrantly, with great moments transitioning into wonderful memories shared with those whom I love very much. Also like everyone else, I’ve experienced the curveballs that life eventually throws at us all, each with our unique versions.
So, for me, New Year’s resolutions aren’t about unrealistic and temporary aspirations. Rather, my resolutions are about trying to attain the potential that my life offers, making an impact in the world I live in and doing my best to enjoy the ride.
For now, though, one step at a time.
Wishes for happiness and peace are all around during the holiday season. We see them in commercials and embossed on cards. Health, wealth and happiness seem to be the go-to wishes, and it’s easy to see why. We all want our friends and loved ones, even complete strangers, to have these things.
For those with an invisible illness, I have one more holiday wish: visibility.
Too often, those around us aren’t sure how to deal with an invisible illness. They want to make us feel better, and yet, they don’t know how. So it seems they wish we would stay invisible, so they don’t have to deal with their own indecisiveness and uncertainty.
We try to encourage them. We try to show them there’s nothing to be afraid of, and that their awkwardness is natural and something we can overcome together. Yet, as someone with fibromyalgia, I’ve learned that it’s easier to stay hidden, and so have my fellow invisible illness warriors.
As we head into 2017, there are a multitude of reasons why we would want to stay invisible. There’s a president-elect who has openly mocked disabled individuals. Health care is under assault on many fronts. We don’t want to say anything or stand out. We don’t want to make noise in case our jobs are taken away from us and our lives are thrown into chaos.
In spite of this, I wish you the strength to remain visible. For we cannot battle the stigma of our invisible illness by remaining hidden. We cannot work to help people understand what chronic pain is like by staying invisible. Our own physical and emotional health is improved when we’re seen, when our pain is acknowledged and when we’re understood.
My desire for visibility comes from the fact that all individuals with invisible illnesses, regardless of the type or severity, deserve to be seen. We deserve to be acknowledged. And we deserve to be heard. So for 2017, I wish you to be seen, heard, loved and understood. In this way, may all of us receive this same validation, and together, we can move forward to improve our own lives as well as those around us.
Here’s to a visible year!
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Looking back, it seemed so innocuous. I put a lot of wear and tear on my feet through my outdoor adventures and aggravated a prior plantar fasciitis injury. Two years later, I was stunned as I absorbed the reality that I also had a condition that would affect me and impede me for the rest of my life.
A diagnosis of a chronic condition can be traumatic. In my case, it’s fibromyalgia. Brain function and chemical changes led to an essentially permanent fight-or-flight response that often results in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleep, low energy and the list goes on.
But whether it’s fibromyalgia or other chronic illnesses, there is one stark reality that accompanies the acceptance of that diagnosis: The need to deconstruct your life in order to reassemble it in a way that addresses your new limitations.
Conditions such as these aren’t cured with a pill, a pat on the head and going on your merry way. Instead, they inflict both obvious and subtle problems long after you’ve left the doctor’s office. The obvious struggles include experimenting to discover the medicines and treatment regimens that provide clinical relief to get you through the worst moments and to stabilize you. That requires time, side effects, setbacks, failed attempts, crushed hopes and a diminished quality of life. And sometimes, that seems to me to be the easy part.
The harder part is accepting that you can’t live in the way you’re accustomed. For me, I’d already spent years working to be the healthiest and best me that I could be. I’d established a lifestyle and life that I loved. I was happy and bouncing between living in the moment and dreaming of my next immersive adventure.
But now that’s all gone.
The only thing I know at this moment is that I can’t really live that way anymore. Living in the moment is currently a fantasy. I need to be cognizant of my condition — all the time. I need to carefully start the day off. I need to religiously take my prescription and supplements. I need to eat militantly. I need to exercise. But I need to not exercise certain ways. I’m stressed by my need to avoid stress whenever possible. After an exhausting day, I then need to sleep delicately to try to make it through the night. The list goes on and on, and when I deviate, I pay the price.
In addition to all of those efforts, I also need to now examine my prior lifestyle and find all the ways I’d now exacerbate my condition. I need to recognize how certain fulfilling activities will cause flare-ups so I can now avoid them. I need to identify how certain tendencies got me this far in life but now have become liabilities. I need to assess my personality, behaviors and attitudes and hone in on the pieces that aren’t unhealthy under other circumstances yet now create risks for me. I need to analyze my relationships and determine in partnership with those friends and family how I need to modify them in order for them to remain mutually nurturing and fulfilling.
That deconstruction is painful and hard. Having slogged through it once before for other reasons, I know what lies ahead. It requires an introspection that most people don’t engage in. It forces you to analyze not just how you’ve lived but to understand why.
It inevitably drags some skeletons out of the closet because no one lives perfectly, and everyone has some blind spots. It forces you so far beyond your comfort zone that you couldn’t find it with binoculars. It leaves you questioning your perception of yourself, your world and your place in it.
That dissection and rebuilding also takes time — time that you feel you can’t afford because you’re already chafing at the wasted time it took just to achieve a clear diagnosis. For me, I now look back at a couple of lost years. Then I look ahead to a couple more years to attain a new rhythm to life. As a 45-year-old smack dab in middle-aged territory, I’m very conscious that our time here is finite and I loathe wasted days, let alone months or years. This is my inescapable reality.
But to not face up to the task at hand is a worse fate. To merely wallow onward substitutes a more unappealing situation than grinding out this arduous self-appraisal. It saves the mental discomfort and avoids trials and errors. But instead, it does nothing to move me forward. In fact, it adds to the physical pain and mental stress by refusing to cultivate my ability to self-manage and maximize whatever potential I have.
I didn’t ask for a life-altering diagnosis to endure for all my remaining days; I shouldn’t be forced to break down and reassemble my life. Nor do those around me deserve to become collateral damage from my new limitations. Unfortunately, these things aren’t up for debate. The only choice is where I go from here. So I will doggedly labor through that deconstruction, focusing on one brick at a time in the foundation of that new life and believe that better days lie ahead.
For now, one step at a time.
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