Fibromyalgia, as with any serious and chronic illness, can drastically alter your life. Mine has certainly changed.
I had a business planting flower gardens to attract butterflies, which I totally loved. Being a butterfly (and hummingbird) gardener was a big part of my identity. There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.
I remember when physical pain first started to concern me. I would go out to my garden every day to do something. One day I noticed how stiff my joints were. I bent over and felt pain in my hips. Then it started hurting in my ankles. It was a new type of pain that I had never experienced before.
I’d been bitten by a little deer tick earlier that summer. Little did I know this might change my life.
One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time. It was nearly a foreign word.
Due to inadequate health care where I was living, I didn’t get to see a specialist.
I had dealt with arduous episodes depression in the past. I had already in many ways, gone through a process of elimination as to what I identified with in life. I stopped my gardening business and later went back to college part-time.
I moved to a metropolitan area after the tick bite that summer when the joint pain had started. I believed the health care would be better and I think it has been.
I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.
The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well. By 2006 my life had turned upside down and illness defined every moment I lived.
Just about everything in my life has changed.
I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.
I certainly can’t plant gardens anymore.
My hobbies are less active. My walks are slower. I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness. We go slower and stop more often.
Time is different too. I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing. I don’t know if I’ll be in pain two weeks from now or even tomorrow. I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.
I am grateful to receive disability benefits. I have health insurance. It’s pretty hard making it on a low income.
Some people look down on those of us who receive disability benefits. People complain about their taxes, but I pay taxes too. Every day in some way I pay.
If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing; all just to get, “a check.”
The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.
I was once a firefighter too. Part of my identity had always been that I was physically very strong. I was proud of this and enjoyed recreational activities, especially while raising my son.
Another part of my identity was being able to handle a lot of responsibility. I was a single mother who worked hard and I burned the candle at both ends.
An expert in fibromyalgia told me this is the case with many people with this condition. The majority of patients, he said, never were the kind of folks who sat around all day doing nothing. Just the opposite for most of us. We were athletic and go-getters.
I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences. I’ve had to give up many of my preferences.
I hear all kinds of remarks from people who don’t understand what they can’t see. I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding. Many people don’t believe what they can’t see.
People say the weirdest things.
“I work in my yard (all day) because I have to.”
“I have to work everyday because I don’t have a choice.”
I stopped working because I didn’t have a choice.
“I wish I could get paid for feeling bad,” a neighbor told me.
“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.
“You just get worse and worse don’t you.” (Same relative).
“You sure do stay sick a lot.” Lots of people have said that to me over the years.
Some people mock fibromyalgia. Most people have no idea what it is.
Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt. Not only do they hurt, but they also cause us to withdraw into isolation. We become alienated from society, our community and for some of us, from our family.
People with fibromyalgia often talk about having good days. This means we have days when we wake up with some energy and less pain. We can do more on these good days, which causes some people to think we’re faking illness. If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.
We’ve all heard people say, “You look just fine.”
A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”
It was more of a statement than it was a question. I didn’t know what to say.
“Well, my nose doesn’t hurt,” I answered.
She once referred me to a specialist for a digestive problem. He was horrible! He asked about the fibromyalgia, and then depression. He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.
The doctor had suggested I go see the fibromyalgia specialist who had moved away.
“You look perfectly capable of driving four or five hours to me,” he said. He failed to realize that I would have to go see the doctor and drive back home!
He continued and asked, “Did you walk here from the parking lot?”
“Yes,” I said, trying not to cry, but the tears were coming.
“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”
I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.
“Why are you crying?” he asked again, sarcastically.
I told him I was sick, in pain, weak and tired.
I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.
My current family physician understands fibromyalgia is a complex and painful condition. He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.
I was finally able to go see the doctor. I told him that my family physician wanted his advice. He said to tell him he was doing the right thing by treating my pain.
He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick. Some patients cannot handle those drugs. I’m one of them. Some patients need tried and true pain medication, for pain. Perhaps that is a little too simple for some doctors.
The specialist also said a patient should not be expected to live in pain when there is medication available to treat it. He said it was neglect when doctors choose not to treat pain.
I told him about the remarks from my former doctors and nurses. He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”
He was a great doctor!
Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!
They’ll say things like, “It’s a label you do not want.” They ought to say it’s a serious illness you do not want!
We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”
I think many people do get wrongly diagnosed. I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.”
It’s hard to let go of all the things I used to love doing. It’s hard accepting chronic illness. It’s harder hearing hurtful remarks from family.
I have a few things I enjoy doing. I started this blog, which I do so enjoy.
I love living with dogs. They take me for walks and help me get through many hard times.
I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face. It reminds me of myself.
I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.
- ME/CFS & Fibromyalgia: Families Are Biggest Skeptics & Critics of Patients (fightingfatigue.org)
- Stages of Adjusting to Chronic Illness (fightingfatigue.org)