15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

Living with fibromyalgia is hard to explain unless you've actually experienced it. After all, we look "normal." As an invisible illness, fibromyalgia's symptoms - ranging from chronic muscle pain and fatigue to digestive problems to memory issues - aren't visible to the naked eye. On good days, we may even seem 100% healthy, going on hikes, family vacations or girl's nights out like everyone else.

But the (somewhat ugly) truth? By traditional medical standards, we're not "normal" - and fibromyalgia impacts more of our daily lives than people probably realize.

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

So what does living with fibromyalgia look like - beyond the symptoms I live with every day? Here are 15 ways - from the routine I keep to the coping mechanisms I often rely on - that anyone can "see" my invisible illness, fibromyalgia.

1. My driving "curfew," which rarely strays past 7 o'clock.

Many people don't realize that insomnia is one of the common symptoms of fibromyalgia - which is why I've been taking sleeping medication since my diagnosis at age 11. I take my pills every day at 7 PM sharp...which is why, by the time that a lot of college students are just getting ready to hit the town, I'm already rockin' PJs. And during the special occasions when I am out late? I take my pills late and deal with the (insomniac) consequences...or I call shot gun!

2. My love of massages.

Do I really need to explain this one? Constant pain + a good masseuse = one happy fibro warrior. (And, yes, I might be hoping to befriend some of the physical therapist grad students at MSU. I'll happily trade baked goods for a massage!).

3. The heat packs that I always have nearby, even during the summer.

One of the biggest symptoms of fibromyalgia is muscle pain...and one of the best ways I've found to manage it is heat. When my joints ache, I lay the pack across my legs. When a flare-up hits, my shoulders and my heat pack become BFFs. And when I go to sleep at night, a heat pack rests on my chest like a warm, comforting security blanket. My college roommates could always tell that I was getting ready for bed when the microwave started to hum. See me wearing a heat pack during another time of day? Consider it a visible sign of the invisible pain I'm likely feeling.

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

4. My constant fidgeting in my seat.

When my muscles get too tight or are forced into the same position for a long time, they're more likely to flare up or get knots. As a result, I try to always keep changing positions - especially during those brutal three-plus-hour lectures in college (and now in grad school). Another reason that evening yoga or stretching is a must...

5. The pillow I always take with me while traveling.

I struggle with the most fibromyalgia pain in my neck and shoulder muscles. If one of those muscles gets tweaked, I can be hit with debilitating headaches for weeks. So when I'm traveling, I never leave my trusty pillow at home. I've taken it on airplanes, thrown it in cars during our (various) long road trips, and I'm (of course) bringing it to grad school with me.

6. My love of unscented everything.

There are two kinds of people in the world: the ones who love perfume, cologne, candles and everything scented...and the ones who get a headache from scented laundry sheets. I - and many others with fibromyalgia - am part of the latter group.

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

7. The days when I can barely remember my own name.

Do you ever wake up in the middle of the night and are so disoriented, you can barely remember where you're sleeping? Fibro fog feels exactly like that...except you're awake, and it can last for days. I experience less fibro fog than years ago (thanks to figuring out the diet that works for me + other lifestyle changes that I talk more in depth about here). However, when fibro fog does hit me, even simple tasks become a lot more difficult.

So if you see the fibro warriors in your life struggling to drive to work or remember where they left the phone that they were holding five minutes ago, you're "seeing" the invisible fibro fog they're battling that day.

8. My blackout curtains.

With fibromyalgia, getting good sleep is hard. Period. So, even though they might not be the prettiest, blackout curtains are a must in my bedroom.

9. My dislike of big weather changes.

My best friend also has fibromyalgia, and big weather changes make her joints feel especially inflamed and achy. For me, weather shifts can cause the same symptoms or, even more often, extremely bad sinus pain and headaches. Either way, when weather goes from sunny days in the 90s to cloudy days in the 60s, my body is usually not a fan!

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

10. The jacket that I have nearby 24/7.

Another truth about living with fibromyalgia? Cold temperatures and I don't get along well. When I'm cold, my joints hurt more than usual and my muscles tense up, which can lead to a fibromyalgia flare. So, yes, I'm that girl who always has a jacket with her - and the girl who wears many, many layers when winter rolls around (especially now that I live in Minnesota!).

11. The random times I'm pulling my hair or earlobes.

I'm sure I've gotten a lot of weird looks from these coping mechanisms, but I'm usually in too much pain to care. When I'm having a muscle-tension-induced headache, I've learned that pulling on the back of my earlobes can help stretch the muscles that are usually causing the problems. Same with pulling my hair. Like they say...if it's not broken, don't try to fix it. And, as strange as these stretches might look, they're often exactly what my body needs.

12. My love of routine.

Honestly, I like routine. I like knowing when I'm eating, when I'm showering and when I'm taking over the world (a joke...kind of). However, I also follow a routine because of fibromyalgia. I stick to the workouts I know will challenge me without tweaking a muscle or causing a flare up. I stick to my version of a "fibromyalgia diet," or the foods that can help me, and my joints, feel our best. My life may be a bit less exciting than some, but my life is also less painful than it used to be.

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia

13. My down days.

I'd like to think that I'm a positive person and, I strive to make living with fibromyalgia (and celiac disease) the most fun as possible. Sometimes, though, it just sucks. It sucks to hurt all over your body when you didn't do anything "wrong." It sucks that you look "normal" when you feel like a zombie. It sucks that the new *insert some random workout, food, activity* you tried to add to your routine majorly backfired. So if I seem extra emotional, quiet or upset every now and again, know that it's probably not you. It's probably just my body, mind and I fighting it out.

14. My love of comfy clothes.

Yes, I'm sure there are plenty of fibromyalgia fashionistas out there (and you totally impress me, if that's you!). But sometimes, when you're feeling cruddy, nothing says "comfort" better than PJs or sweatpants.

15.  The plans I've unexpectedly canceled.

Sometimes, no matter how careful I am with my diet or exercise routine, a fibromyalgia flare comes out of nowhere. So, if people with fibromyalgia keeps changing plans with you at the last minute, try to see it as a symptom of their invisible illness...and not a reflection on the strength of your friendship.

15 Ways Anyone Can "See" My Invisible Illness, Fibromyalgia


And when we see you standing by our side - or, more often, lying beside us on the couch binge-watching Netflix instead of going on that 6-mile hike - know that we appreciate you working with us. Even more importantly, know that we appreciate you...for not only "seeing" our invisible illness, but also for seeing how you can make living with fibromyalgia a little bit easier for us.


*Also found at Share Fest, Dare to Share, RunningwithSpoons*

Do you know someone with an invisible illness, or even have one yourself? What's one way you can "see" it? Tell me your thoughts in the comments!

Comments

  1. Oh my goodness are we the same person? I've outgrown my scent aversion, but I still have days where it bugs me. Otherwise, spot on. I'd add the water/fluid I carry with me always because dehydration destroys me. Also, my non-negotiable workout time. Even if it's only 15 minutes, some movement saves me.

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    1. YES!!! I totally forgot to mention the water thing...and the work out time. I never even considered that the water thing was fibro related...another quirk suddenly makes sense ;)

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  2. This was so great to read. My Mum has Fibro but she also has Alzheimer's Disease, so it's not possible for her to articulate her needs. I understand more now why she's always getting up and down out of her seat and I think I'll try some heat on her joints. Thanks! Leanne x

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    1. Your comment made my day - so glad that I can help. Heat really can make a huge difference. Much love your way!

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  3. Thank you for making invisible illnesses more visible ♡. I can definitely relate! I have Graves Disease, and even in remission, my immune system is far more delicate than it used to be and I don't have the energy I once did.
    I definitely appreciate the need for a routine and a healthy diet that supports my wellbeing.
    I hope you have a beautiful week! Keep spreading awareness and sharing your goodness. It's wonderful!

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    1. Thank YOU for sharing your own story with invisible illnesses. Sending much love and health your way! <3

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  4. Hey Casey, thank you for sharing your story. I have HIV and I a always in bed by 8pm. My friends keep asking why I sleep so early but I can't answer.

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    1. Sometimes the only answer I can give is, "because I do." Sending much love your way!

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  5. good to know that we are not alone. I have a good friend of mine that I confide in as she suffers as well. I am glad that you shared this post
    come see us at http://shopannies.blogspot.com

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  6. We share so many of the same fibro issues. If you don't mind I am going to write a post about my own issues with it and would like to link my readers to this post as my inspiration. Thanks for sharing!

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    1. I'm glad that this post spoke to you and I would be thrilled for you to write about your own experiences and link to my post! Sending lots of love and healthy thoughts your way! <3

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  7. I salute you for the courage to write this post! It is not an easy thing to do. BTW, I am not a candle /colon person either. I get really confused when someone gives me a candle as a present...why?

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