Living with Fibromyalgia

‘Tis The Season To Be Jolly… A Fibromyalgia Warrior’s Guide to the Holiday Season

Ahhhh… The Holidays… That magical season when we all rejoice…

The weather gets nippy (at least in the Northern Hemisphere – and away from the Equator!). The streets shimmer with thousands of tiny light bulbs and fake icicles (seriously though, icicles are never blue in nature).

The evergreen trees get pulled from their homes to be wrapped in shiny plastic. Frozen water falls from the sky and adorns the ground in a white blanket of fluff which soon will be draped in the black hue of pollution.

We will reluctantly go to Auntie JoAnn’s house, where the kids will be forced to hug Uncle Joe’s armpit sweat and to kiss Aunt Barb’s day-old beard.

We will eat cranberry sauce that looks like a blob with ridges on the side, fresh from the can it just came out of. The turkey will be both raw and dry, in an exploit science will never be able to explain.

We will all pretend eggnog is the greatest thing to have ever been done with eggs and nog, whatever that may be.

And we will have pumpkin everything up-to-here. On every corner. In every store. In every kitchen, student dorm, apartment laundry room… EVERYWHERE.

Wait… Was that too cynical? My bad.

Ok, so without being too dark and sarcastic, let’s agree that we all have to deal with family and friends during the Holiday Season to one extent or another.

Whether you celebrate Kwanzaa, Christmas, Hannukah, Ramadan, the Winter Solstice, Festivus or any other Holy Day, you just can’t escape it.

Everyone alive has a time of the year when they get together with others to celebrate.

And it can get ugly.

1- What’s so bad about the Holidays?

Technically, nothing. The Holidays are amazing. Most people are joyous, in an overall good mood and most enjoy meeting up with friends and family to share their happiness.

Most.

Disclosure: I’m relating my personal experience. I’m not saying every family is like mine. Your experience will in all likelihood differ from mine.

I’m one of the few ones who actually dread the Holidays. I have several reasons for that.

First, I live literally 4000 miles away from my family. I’d have to drive for two days and swim for three months before driving for another day in order to go see my Mom and my Sister. To top it off, my Dad passed away last year, and it adds a layer of feel-sorry-for-myselfness.

Second, my wonderful Mother in Law is not well and has not been well for the better part of the past five years or so. I love her so much! To see her struggle is devastating. She has always been an important part of my life since I was 19 years old… and I’m now 41! So yes, it’s tough.

But these reasons are nothing anyone can do anything about. It is what it is. I chose to move far away from home, and while it is getting harder and harder as I grow up (I’m not done!), it is the choice I made to be with my husband. I do not regret it, but it is hard sometimes.

As for my Mother in Law, again, no one has any control over any of that. I guess one night even be tempted to say her fate was decided the day she was born.

But my third reason for disliking the Holyday Season is that I have fibromyalgia.

I am a Fibro Warrior.

Every single day of my life is spent battling a lifelong condition that is grossly misunderstood and has no cure. That prospect alone is enough to put your morale down under your shoes…Hmmm… maybe the métaphore doesn’t work in English – I just mean that your self-esteem is shot down every time you think about what your future looks like.

So I LIE.

2- Woah! Wait, what?!? You LIE?!?

Everyone around you is happy and jolly and celebraty (I know – not a word) and you just aren’t.

And not just because smiling hurts your rictus muscles. No. It’s because every time you move, it hurts. Every time you breathe, you are reminded of your pain. Every time you walk around, it hurts.

Let’s face it: when you’re hurting, it’s tough to be happy. It’s actually almost impossible.

So we, Fibro Warriors, we fake. We fake all the time. We LIE all the time.

“Oh hi! How have you been?” “Good, thanks!” LIE.

“Nice to see you, how are you?” “I’m fine, thanks!” LIE.

“Hey! How are you doing today?” “Wonderful! Thanks for asking!” LIE.

But what’s our alternative? It’s either we LIE, or we unfold our life story and it takes three hours, then spends the next five hours debating with someone (who, ultimately, means nothing to you) about whether or not fibromyalgia is real. Yeah, that’s a nice alternative, isn’t it? Not really.

So to avoid the pain (pun intended!) of having to go through the whole story, we just LIE.

It is a little white lie to avoid being the target of ridicule and skepticism. Fibromyalgia is still widely misunderstood and unfortunately, until the common perspective changes, too many people are perpetually under the impression that fibromyalgia is fake. Not real. An excuse to whine. A lie…

If people already think of us as liars, then it doesn’t do much harm to indulge them and lie a little bit, now, does it?

3- So you’re trading one evil for another?

Pretty much.

Family and close friends who should be the ones defending us, protecting us, well… too often they are the ones who don’t get it. So what’s our choice, really?

Instead of being the target of their misguided “attention” we choose to play along. To pretend we’re just like everyone else

And, oh no, there is no way we could understand the overwhelming pain of your day-old paper cut. My goodness. You must be in agony…

See, it’s simply the human nature. I don’t begrudge anyone who closed-mindedly discards my proven medical condition. It’s not their fault, really.

As human beings, we have the need to understand what others are going through. We want to relate. That’s why when you hear a story, unconsciously you link it to some event that has happened to you in the past. That’s just the way our brains work.

So when you tell someone you have fibromyalgia, they try to empathize by remembering something that happened to them and brought them pain.

It’s kind of like women who say childbirth is the worst pain in the world, and no male can ever understand the excruciating pain it is. I’m about to make a few enemies here… but let’s get real, shall we? Childbirth isn’t the worst pain anyone can experience.

It hurts, I agree. But the torsion break I suffered when I broke my leg years ago, now that was excruciating. Sorry Ladies.  Human nature tells us that the most pain we have experienced is the most pain anyone else can experience.

So yes, to avoid having to argue for hours on end, I LIE.  Sorry.

4- It’s not all selfish!

I need to clarify here that all of this is not done to be selfish and avoid being bothered. I recognize that the Holiday season is a cause for celebration for most people around me. Why would I ruin all the fun by bringing the mood down?

I cannot in good conscience walk into a room full of happy people and suddenly decide that I should tell everyone about my problems, in great details, and talk their ears off about this pain and that pain and the other.

I know my overall stance has always been to be honest. There is absolutely no shame in having fibromyalgia. It’s not like you’ve chosen to have fibromyalgia! So I’m not saying that I am ashamed of my life. I’m just saying that there are times that are better than others to advocate and educate.

fibromyalgia and Holiday Season

5- Are we talking compromise, here?

Yes.  Yes, we are.  Just like for any other relationship in the world, whether be it romantic or professional, compromise is primordial to our survival.

See, there is no right or wrong in this situation. There are educated and uneducated people when it comes to fibromyalgia. And since we have established that a family reunion is not the best place to get on your soapbox, then compromise is in order.

Do not under any circumstance compromise your integrity, of course. But be open to keeping the peace around the Holidays. You are bound to be met with judgment and talks behind your back types of situations.

It’s just the way it is. We can’t really change that. Look, idiots will be idiots. They can be idiot coworkers or idiot family members, but in all honesty, we all know a handful of idiots.

So now what?

6- Now what can you do to have a good time?

Keeping the peace for others, avoiding them the “trouble” of listening to you, all that is fine and dandy, but it does not help you in any way.

The Holiday season is also a time for YOU to be happy after all!

Here are some ideas, some tried, some silly, some only heard of and never personally experienced. But I think each of them has its purpose.

– It’s a given that the Holiday season is stressful. Between finding the right gift, fighting crowds in stores and facing Aunt Irma, it can take its toll. But you know what? You cannot change that. There is no way you can change how other people act. It’s a simple fact. So let go.  Let go of what you cannot change.

Ultimately, the only person that matters is you. You make the choice to care about other people, and that’s fine. But try to not let what other people do or say affect you. Remember you cannot change people.

– Loud noises, being startled, walking around, carrying stuff – all things that can make you hurt. It’s not fair. We can’t pretend it is. But it is the way it is. If there are areas of your life where you can get help, shamelessly ask for help.

Don’t decorate a tree if lifting your arms up hurts. Don’t go see a scary movie if getting startled sends a wave of pain down your body. Don’t walk around the mall aimlessly if walking is difficult.

– Find the alternatives. There are alternatives to everything in today’s society. Ask a neighbor to change that lightbulb. Shop online. Buy a pre-decorated tree. Be creative!

– Be prepared. If you know that Uncle Shawn will ask you how your imaginary condition is treating you these days, in the most sarcastic voice he can muster, hand him a scientific journal article that disproves the myths surrounding fibromyalgia. All you have to do is hand out the information with a smile, tell him to read it when he has a second, and move on. Heck, have a copy of this article ready to give him.

– Don’t dwell on the negativity, There is nothing positive that can come out of it.  You are in charge of your view of the world. You can choose to be affected by everything other people tell you, or you can be in control of your own life and smile.

I’m not kidding. Smiles are contagious. Imagine facing someone who wants to put you down. They’re smirking in that evil way we see coming ten miles away. But instead of receiving their remarks with shame, fear, or defensiveness, just smile.

It will absolutely destabilize them. Don’t take the bait.  Counter their negative remarks with kindness. Trust me, they will get tired of it before you do.  Plus it’s kind of fun!

– Fibromyalgia means that unfortunately, you may get fatigued quicker than most healthy individuals. There is no shame in this. You have a medical condition that is fighting inside your body. Go take a nap on Grandma’s bed.

Step outside for some quiet alone time for a minute. Excuse yourself from the conversation and go sit alone. Anything you need to do to regenerate is acceptable. Don’t be afraid to take care of yourself.

– Some foods may trigger flare-ups. You cannot dictate your dietary needs to everyone unless you are hosting and cooking. So instead of being a demanding tyrant, be accommodating. Of course, I’m not telling you to eat what makes matters worse (literally!).

Just like you should not be affected by other people’s lives and opinions, you can not in good conscience expect other people to bend over backward to meet your needs.

What you can do, however, is talk to the host beforehand and explain that due to some health issues, you may be bringing alternatives to the dishes offered. That’s right. I am telling you to bring your own food.

Look, I find it nicer to bring my own stuff rather than eat nothing. Or suffer the consequences of my own poor decisions if I go ahead and eat my “trigger foods” knowingly. I guess it comes down to finding alternatives again. At least, I am consistent with my train of thoughts!

– If the situation permits, you can share how you feel as candidly as possible. There is really no reason you should suffer all alone in the corner. But you have to make a choice and evaluate what makes the most sense: sitting alone for a few hours or fielding tons of questions.

Because inevitably, if you bring up fibromyalgia, someone with zero knowledge will have a strong opinion.  And it will be up to you to educate them. Gently…

In conclusion, and as always, you can seize your opportunity to educate the people around you.

Educate, but don’t preach! Educating people is not the same as preaching.  When you educate, the end result is a more informed audience.  When you preach, the end result is people who feel like you shoved something bitter down their throat, and all they want to do is forget about it all.

Listen, Fellow Fibro Warriors, you are absolutely amazing.  AH-MAZE-ING. You don’t need me to tell you that.

In the end, the Holiday Season belongs to you just as much as it belongs to anyone else.  You have the right to be happy (it is actually in the American Constitution!). No one, and certainly not me, is telling you to suffer abuse at the hands of people you may not even like that much, to be honest.

In the end, YOU make your Holiday Season as happy as you want it.  No one can take that away from you

Until next time, Fellow Fibro Warriors.  Happy Holidays, and keep up the good fight!

Thanks for reading this article! Let me disclose that I am not a doctor or a healthcare professional in any way, shape or form.

The articles I write simply tell my story. I want to share with others what it is like to have fibromyalgia, with the ups and the downs that come with it. I am not one to sugar coat things, so you can expect blunt honesty from me.

My goal is to relate real stories, real feelings, and real physical sensations. It may not be “politically correct” at times, but it is a reflection of my personal experiences. If you would like to share your story with our Fellow Fibro Warriors, feel free to email me at [email protected].

About the author

Servanne Edlund

Servanne Edlund

Narcolepsy. Ankylosing spondylitis. Fibromyalgia. The perfect trifecta to sleep through life! As a mom of two teenagers, I need to keep going – so I have found coping mechanisms to overcome the hurdles placed on my path.

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