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5 Thoughts That Often Go Through My Mind as I Live With Fibromyalgia

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Having a chronic illness affects the person diagnosed with it in many different ways, but there are many similar thoughts we seem to share with one another.

I used to think it was just me who wondered about this stuff until I joined a support group of others with fibromyalgia syndrome (FMS) online. It quickly became apparent that our illness leaves many of us fearful about the same things.

Life isn’t always easy, and while we try to keep a positive mindset about all our blessings, many of us will have fearful thoughts from time to time. Learning to process these fears is a big part of accepting your new life. I am sharing these five points in hopes of helping to raise awareness and understanding for those who support and love someone with FMS, as well as to let others with FMS know that they’re not alone.

1. “I am useless.”

No one feels more guilt about the loss of abilities than the one trying to live a new life with an illness. Feelings of being useless can lead to depression, anxiety and sometimes suicide. It’s important for the person who is chronically ill to be supported by a great group of family or friends who can remind that their value is not tied to the income they contribute, how many miles they can run, how many bags of groceries they can carry, how much homework they can help to complete, or how clean they can keep the house. But rather, to remind them their value lies within their heart and the love they can share and provide. Their value is simply in being them.

2. “Why me?”

For most people, it is impossible not to wonder if there was some way you could have prevented this illness or if there is some reason it swallowed your life. Many think about the “why me” as we mourn the loss of the lives we used to lead – or when we hear people say it could all be prevented by diets, lifestyle or simply not being stressed out. We may wonder about the “why me” when someone says maybe it was caused by an accident of some medical trauma. We may wonder about the “why me” because unlike so many other illnesses, FMS is still a mystery. No one has the answer. No one has a cure. No one has a guaranteed treatment plan. And so we just keep wondering, “Why me?”

3. “When will they leave me?”

Many people with FMS can tell you they have lost friends, family or both during their time dealing with this diagnosis. FMS is not easy to live with and it is also not easy on those that surround us. In many ways the people we were, disappear. Those with FMS will likely also become more dependent on their spouses or other family support systems.

They might not be able to work as much. They might not be as much fun as they were when they now spend more time on the couch resting, than they do on fun-filled adventures. Their social engagement levels may drop. They may become quieter and in search of peace. They may need to slow down. And while the great family and friends will slow down with you or allow you rest in between the fun times, there are many who will simply choose to move on.

Friends may stop asking you to come out. Spouses might get tired of staying-in or pulling all the weight with the household income, the kids and the dishes…all that stuff that use to be a two person gig. While many FMS patients continue to lead very happy lives with loved ones, many will think from time to time as they feel “useless” on the couch, “When will they leave me?”

4. “What if this is cancer?”

Fibromyalgia is an intense illness that seemingly plays tricks on your entire body. Sometimes there are new aches, pains or strange symptoms that pop up every week. There can be mysterious bruising, chronic pains, rashes, loss of senses like blurry vision, chronic migraines and extreme exhaustion. There can be chronic irritable bowel syndrome and terrible gas pains. For some, there is a state of nausea that can come at any time.

All of these and so may more can also be common signs for various cancers. Yet, once you are diagnoses with FMS, my experience has been that doctors stop regular testing for all the other possibilities. All new symptoms gets lumped into your FMS – which some doctors will tell you they just don’t understand and just can’t figure out how to manage.

If you are lucky to have a specialist, they will continue to run MRIs and blood tests to watch for indicators of cancers, but for so many in Canada, once you are labelled FMS – you drop to the bottom of the list for any specialist. You are pretty much labeled “untreatable” and therefore all testing stops. Unless you fight for it. Constantly.

I’ve seen many give up fighting for tests, because ultimately they are too exhausted to fight. And, sadly in discussions with my FMS support group, many have been diagnosed post-FMS with cancer when treatment was too late. I’ve seen some members speak of a parent dying suddenly, only to have an autopsy reveal cancer throughout their bodies – but due to their FMS, they were never tested for it. The, “What if this is cancer?” thought hits many FMS warriors at least a few times a year. Usually when some new big symptom pops up. Or at night when they lay awake, exhausted, yet unable to stop the fear.

5. “Thank God or whatever creator there might be, I am still alive.”

While most FMS patients struggle with the mental challenges of accepting their illness and the challenges it presents, most FMS warriors live with a true love of life. They embrace the knowledge that life can change in an instant and that being alive is a blessing. We also all know that there are some days that are terrible, which means the days that are better is meant to celebrate. We can embrace the smallest of blessings, like a day without pain, a day where we can go out with friends, when we stay up late to visit with a spouse, or a day where we could chase our kids around a playground. We celebrate the days we can go for a walk. We celebrate the days we can open our own peanut butter jars. We celebrate the days we are able to clean our homes. We celebrate the days we have the energy to hug and hold our kids. We celebrate life, because in spite of all the challenges, we are still here to witness the beauty of the people around us that we love.

Getty Image by Good_Studio

This story originally appeared on Yvette’s Slice of Life.

Originally published: April 24, 2018
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