Real People, Real Stories: Fibromyalgia E-Book

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Whether you (or someone you love) have just received a fibromyalgia diagnosis, have been a part of the fibromyalgia community for a while, or simply want to learn more about fibromyalgia, this book of stories is for you.

This book is comprised of stories written and shared by people with fibromyalgia. You’ll read an honest, heartfelt letter to anyone grieving the loss of who they were before fibromyalgia, from someone who’s been there. You’ll learn about the way words like “fog” and phrases like “making it through the day” can change after a diagnosis. You’ll follow the journey of a woman with fibromyalgia purchasing a walking stick for the first time at age 22. You’ll find these stories and more in the following pages.

All of these stories have appeared on The Mighty, a site where people share their personal experiences with disability, disease and mental illness. Visit our submissions page to learn about sharing a story with us — we’d love to read yours. Click below to download our free e-book.

 

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The book contains the following stories:

A Letter From Your Friend With Fibromyalgia by Lizz Schumer

To Anyone Grieving the Loss of Who They Were Before Fibromyalgia by Jennifer Yant

10 Things I Wish I Knew When I Was Diagnosed With Fibromyalgia as a Teen by Autumn Burns

What a Typical Morning With a Fibromyalgia Flare-Up Is Like by Kirri Liepins

5 Ways ‘Fibro Fog’ Affects Me by Pamula Floyd

When I Realized I Needed a Walking Stick at Age 22 by Jodie Wigg

How Honest Should We Be With Our Loved Ones About Our Pain? by Tamiko Arbuckle

16 Things to Stop Doing If You Have Fibromyalgia by Julie Ryan

Why I’m Doing Away With To-Do Lists As Someone With Health Challenges by Jacqueline Weir O’Brien

5 Daily Reminders for FInding Happiness With Chronic Illness by Kittie Rayborn

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10 Good Things About My Fibromyalgia

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A couple of weeks ago, I wrote about being in a fibro funk. The post ended happily enough with me emerging from the funk ready to tackle another day. That was exactly how I felt at the time.

When I started my blog, I made the conscious decision to try and write only when I was feeling positive (or, at the very least, not to write when I was feeling particularly negative). The blog is called Hope in Pain after all. I wanted both a place where I could write about my feelings, as well as a place where I could send out a positive message about living with chronic pain.

The truth is, since writing about my emergence from the funk, I slipped back into it. The slip wasn’t as bad as the first time. I wasn’t wholly immersed in said funk, but let’s just say I wasn’t a ray of sunshine to be around.

Anyway, I am currently on two weeks holiday, and it’s amazing what a little rest coupled with daily walking, time with the other half and sunshine can do to lift one out of a funk. I was reminding myself of this at 5 a.m. this morning having already been awake for three hours thanks to “painsomnia.” Good times!

So, in the interest of staying positive, I set myself the task of compiling a list of the good things about having fibromyalgia. Let’s just say I like to challenge myself!

1. I appreciate my family and friends.

2. I look at the big picture.

3. I question what I want out of life and focus only on the things that really matter.

4. I set goals (health, fitness, personal, work) and stick to them.

5. I stop and smell the flowers. (Literally, I can’t walk without stopping anyway.)

6. I take care of myself.

7. I appreciate the joy in life.

8. I recognize when others are having a hard time.

9. I learn more about myself (including how strong I really am).

10. And, last but not least, having fibromyalgia has introduced me to a world full of “spoonies.” An amazing bunch of people who support one another unconditionally through words of advice, empathy and humor.

There it is! Ten good things about having fibromyalgia. And they’re not small things either, if I do say so myself. 

Follow this journey on Hope in Pain.

Lead photo source: Thinkstock Images

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The Surprising Trick I Use When People Don't Understand My Illness

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I hear it a lot. And I’ve experienced it myself. “My (friends/family/husband/wife/kids) don’t understand my fibromyalgia!” Or my multiple sclerosis, or rheumatoid arthritis, or (insert chronic illness here).

It’s normal to feel pain and hurt in the face of this lack of understanding about our chronic condition from others. And it happens most often with invisible illnesses like fibromyalgia. I completely get the confusion from feeling like they “don’t trust us” and “don’t believe us.”

“So what can I do to make them understand?” I’ve been asked. 

My answer?

Nothing.

That’s right. Nothing. Why?

First, let me tell you the story of how I came to this understanding.

Back in late 2007 I was desperate to find a way to make my then-husband understand why I had to leave our marriage. I tried over and over to explain all of the complex factors at play so that he would understand why I was causing this pain to him. (And to me.) I tried explaining that coping with all of this was exacerbating my fibromyalgia and I needed, wanted, dreamed of getting back some degree of control over my health. I was so tired of feeling stressed. 

It seemed the most natural and important thing in the world — wanting him to understand — and it was egged on by his “but why?” queries. I had spent 10 years with this man, for whom I still had a degree of grudging respect, and I wanted him to get it. To get me. 

But it didn’t matter how I phrased my explanations, which point I made, or how often. He spent as much time trying to poke holes in my reasoning, to get me to see his perspective, as I was spending trying to get him to see the situation through my eyes.  

And then it hit me. I could stop trying to make him understand, because he simply was not able to understand and would never be. Not because he — or I — had any particular failings. I just realized that every person is only capable of understanding from their own level of perception and experience. 

It was like a huge weight lifted off my shoulders. It was a freeing sensation where I suddenly realized I don’t need to struggle in that area any longer. Thank heavens, because every little thing was so hard right then.

I gave myself permission to stop trying and simply accepted that he was not going to understand. I let myself off the hook: no more frustration that I couldn’t figure out the right way to communicate what I wanted him to understand. No more merry-go-round of sparring moves in a debate about whether my choice made sense… to him. Because that didn’t matter. It made sense to me. I needed to take care of me, and that was the only thing I was responsible for. Nothing more.

This one incident changed the way I thought about feedback from others, and it helped release me from the worry and weight of how others saw me. It was enough that I understood me. I was enough. 

I have learned how to release others from the judgement and burden of an expectation they are not capable of meeting. And I have learned how to release myself from the judgement and burden of a persuasiveness I am not capable of delivering.

I learned this as I was leaving a relationship, true, but this approach still applies, perhaps even more importantly, to those relationships you wish to keep.

Here’s why:

  • In a sad way, the more you try and struggle to make them understand, the more entrenched and oppositional the relationship may become.
  • This increases stress and can increase the width of the chasm between you.
  • This can also increase your chronic illness symptoms, such as the fibromyalgia symptoms of pain and fatigue and fog. 
  • The harder you try to make them understand, the more you signal your unhappiness with the way they are. Strong, healthy relationships flourish when you demonstrate acceptance of the whole person, from the wondrous to the flawed, through your behavior. When you give your partner the space and freedom to breathe and to be, you open the door to transparent dialogue about how your illness affects you both.

So, I suggest letting them go. Release them of the shackles of your disappointment over their inability to understand you, your condition, your pain. 

Release yourself of the burden of failure to convince and persuade. 

Choose to enjoy your relationships the way they are. I choose to cherish those I love for who they are even when they don’t understand.

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I Used to Keep My Illnesses to Myself. Here's Why I Don't Anymore.

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I’ve always been an open, outgoing person. My family and friends know everything about me. If I meet someone new and we hit it off, I’ll talk about pretty much anything. However, when my fibromyalgia got worse, I kept my feelings to myself. I didn’t want anyone to think I was complaining, but most of all, it was difficult to explain. I didn’t know how to express my physical and emotional feelings. I thought no one would understand or care. I also have depression and anxiety. Fibromyalgia may be difficult to explain, but a physical illness can be easier to talk about than a mental illness. Many people are ashamed to talk about mental illness, even with their loved ones. I felt that way at first and kept it all to myself until my invisible illnesses literally became visible. There were days when I walked with a limp, panic attacks occurred in public and in front of family, I had difficulty leaving home, and unfortunately I became too unwell to work. At that point, my immediate family and a couple of close friends were aware of my illnesses, but I still felt ashamed and embarrassed about it all.

The daily struggle I had (along with the typical symptoms of my illnesses) was not having anyone who could relate to my situation. It’s certainly no one’s fault, and I’m glad that many of my loved ones are healthy, but talking to others with the same illness can be therapeutic. The perception of being young is being healthy and active. Typically people around my age (30) are working full-time, have a spouse/significant other, their own home, a social life, and possibly children. Their weekends are always filled with parties, family gatherings, shopping trips, yard work, etc.

My life is completely different. I was young and in pain and I felt so alone, but I knew that I couldn’t be the only one. So, I created a private group on Facebook called “Fibro Fighters Under 40.” I thought making a group for the “younger crowd” with fibro would be beneficial. (No offense to anyone over 40, of course!) Fortunately, I was right. It’s a wonderful group of kind, understanding, and supportive people. It allowed me to talk about fibro and even mental illness more freely and without judgment. I felt like I was able to help others who were in need of support, and there is no better feeling for me than to help someone.

In addition to the fibro group, I began reading more blogs and articles about chronic illness. I was inspired to share my own story to create more awareness and understanding, especially about fibromyalgia, which is often knocked down due to its “mysterious” nature. Until some of my blog posts went public and I read the readers’ comments, I had no idea how many people had lives that mirrored my own. I’m not thrilled with the number of people who battle chronic illness, but I believe connecting with each other is a way to “dull the pain,” so to speak. There are too many people who don’t have support at home and need a safe, non-judgmental place to go. Even if that “place” is on the Internet, it’s a way to exchange stories, symptoms, treatments, and advice. We can support, understand, and relate to one another.

Of course everyone is different and there is no right or wrong in this matter. Some people like to keep medical issues private and only tell their immediate family, others may be more vocal and blog about their experiences. People should do whatever they feel is most comfortable. I wanted to share this because my feelings changed, and both my online support group and writing articles have been great outlets. It has been better for my health to “let it out” than “bottle it up.” It took awhile for me to believe this myself, but I now know that having a chronic illness is nothing to be ashamed of. I didn’t choose to live this way. However, I decided that since I can’t make my symptoms disappear, I’ll work with them instead. I’ll share my thoughts in hopes of reaching people who don’t understand how we live. I’ll continue to support everyone with chronic illness. And I’ll continue to fight like hell.

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What It Means When You Don't See My Pain

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I’ve been thinking a lot lately about the term “invisible illness.” During a hospital stay last year I had a discussion with a few other chronic pain patients about the benefits and drawbacks of living with a visible illness compared to an invisible one. Oh yeah, those hospital stays get crazy!

With a visible illness, one lady explained, you can never get away from it. As soon as anyone sees you, they see your illness. You’re immediately pigeonholed as the “disabled person.” With an invisible illness, on the other hand, you can choose who knows about your diagnoses.

While that’s true, the reality of living with an invisible illness is that people tend to assume you are just like everybody else and can therefore do everything just like everybody else. This means constantly having to explain why you can’t do something, why you get treated differently, etc.

Every morning (OK, five mornings a week) my little companion and I go for a walk. We often pass a couple also walking their puppy; the husband is a colleague of mine. As I said good morning to them last week it dawned on me that, to the outside world, the couple and I look just the same. We all get up around the same time, take our dog for a walk, go home for breakfast and then head to work. The husband generally arrives at work before me and leaves after me but that could easily be explained by the fact that his position is senior to mine. What nobody sees is the struggle it takes me to get out of bed each morning; that I’m not taking my dog for a walk, I’m walking because my knees and back demand it, it just so happens that I have a dog who also benefits from this routine. Nobody sees the exhaustion I face when I get home or the rest I have to take before, during and after I shower. Nobody knows that I used to be an early-to-arrive, late-to-leave worker but that my body simply won’t allow me to be that way anymore.

My point is, one of the reasons fibromyalgia is an invisible illness is because we try so hard to be healthy and do things just like everyone else that in doing so, we make our illness invisible. When my fibro was at its worst it was visible to the whole world. I couldn’t sit or stand up straight, my shoulders were permanently hunched over, my head hung low. My knees couldn’t bend so I shuffled along slower than a tortoise. My immunologist described it best: “You looked as though every part of you was in agony.” Even now I might limp when my knees are having a particularly bad day and walk slower when I’m more tired than usual. At times you will see me with a heat pad stuck on the back of my shirt, or TENS machine wires sticking out of my top. It’s on these days that other people can see my pain. But it’s not only these days that I feel it.

If you can see my pain it’s because I’m in agony and no longer have the strength to hide it. If you see me and don’t see my pain, it’s still there, it hasn’t gone away, I’m just managing it better.

I constantly struggle with not wanting to be known as the “sick girl” but also not wanting to have to explain why I can’t do certain things. Being the “sick girl” gives you an out. People might not know or understand the details, but they also don’t question when you turn down an invitation or say “That’s just too much for me right now.” Looking healthy and turning down invitations brings questions. Why do we find it so hard to accept another person’s right to say no?

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Why Those of Us With Fibromyalgia Should Embrace Being 'Turtles'

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My advice for fibromyalgia is to “Embrace the Turtle.” Or tortoise if you prefer. I like turtles so I am going with them. We won’t win the race by any means. In this hectic, fast-paced society, we have to take a more mellow approach for our own well-being. But, hey, sucks to be those other people, those hares and rabbits, rushing about frantically, I say. They never get any rest and are always stressed. We have forced ourselves to adjust to our illness and that is OK. Maybe it wasn’t what we planned, wanted, desired or had ambition for. I get that. But live in the moment. The past is where it should be, the past.

It is OK to rest. We need to take breaks. To take power naps. And understand there should be no guilt in this. We have fatigue and it is part of managing our day. It can give us the much needed energy to get through the rest of the day or go to a planned event. Planned rest or napping actually helps in getting to some event or social activity.

We have to pace. We don’t pace and we suffer for it. I of course learned this the hard way, more than once because that is how I roll. I feel like I need to push myself when I feel good, which results in me feeling quite bad and needing recovery time, sometimes for days… then repeat. If we pace our activities we avoid this cycle altogether. And that, is much more pleasant on the body.

We are not what we do. We have more value than what we do for a living. It can be a difficult process to give up a career and go down to part-time or to not work at all, but sometimes it is the very best thing we can do for our health. And it is our well-being that counts the most. We are so very much more than a job. And slowly we realize this after we have adjusted.

It is OK to focus on self-care. It is not self indulgent to focus on yourself. To do things that give you pleasure. To do meditation and other things that help with your well-being. To spend time socializing. All things are pieces of the puzzle. Chronic pain is stressful. It is a constant stressor and we need to engage in things to reduce that stress and manage our moods. I would say all factors of self-care are fundamental to our treatment just like anything else. Moderation is key. It is the game plan. Taking a vacation? Moderate your activities but enjoy yourself. Doing housework? Not in one day you’re not. Spread it out through the week. And drop that guilt. You are the turtle, dammit! Embrace that turtle lifestyle! Working part-time and feeling not “productive enough?” You are more than your work. And we moderate our activities. Work is a facet of our lives that needs to be adjusted and accommodated based on our health.

We are too hard on ourselves with brutal standards we feel we need to maintain or think others judge us for — certainly we judge ourselves. We need to know our limits and lower those standards to those limits. They are limits for a reason. We should not be exceeding them. There should be no shame. No guilt. No comparing to a past self, to a perfect healthy self to other people. We are living the chronic illness lifestyle of the turtle. Not the hare or rabbit. As such there is no guilt here. There is what can we do to make an environment that creates the best conditions available and promotes our own wellbeing. And do that.

Embrace the turtle my friends. We will all be happier for it.

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