We Need to Fight Fibro Indifference

Indifference refers to the lack of interest or concern from others. Everyone I have spoken with who has Fibromyalgia has suffered not just with the symptoms, but with the people around them not understanding or caring if they understood the true effects of Fibromyalgia.

Fibromyalgia can be a crippling, life altering illness. Fibromyalgia is not a disease. In fact, it is classified as a syndrome because most people with Fibromyalgia have a group of symptoms and characteristics that occur concurrently with the pain. Not everyone with Fibromyalgia has all of the symptoms, but they do have enough of them and have been through enough testing that their medical team believes it is Fibromyalgia.

I wrote an article on ten things that I’ve been personally told at one point or another while riding this Fibromyalgia roller coaster that are cruel or indifferent and generally not helpful, here’s the link if you’re interested TenThings to Never Say to People with Fibromyalgia.

Because Fibromyalgia is an “invisible illness,” meaning there are no obvious physical manifestations, many people who do not have Fibromyalgia simply do not understand the importance of recognizing, not only that Fibromyalgia exists, but also that people with Fibromyalgia need compassion and kindness just like everyone else. 

For some reason, many people believe that because Fibromyalgia isn’t well understood, it must not be real. That could not be further than the truth. Unfortunately, the lack of understanding from others including friends, family, and medical professionals means that another component to the battle of dealing with Fibromyalgia becomes coping with indifference and lack of understanding or kindness.

One of my Fibro friends once told me she wishes she’d gotten Cancer instead of Fibromyalgia. I was stunned by this. Cancer, in my mind, is another difficult and painful illness, but she explained to me. She said that Cancer is respected as a legitimate illness, people with Cancer get support from nearly everyone, and no one would tell a Cancer patient to stop being lazy or they just aren’t trying hard enough to beat it. 

There are known treatments that may or may not work for Cancer, but at least there are set treatments to choose from, instead of having to try everything and deal with nasty side effects that were not known prior to testing and that if they help may only help for limited periods of time. But most of all, people with Cancer aren’t normally treated like they have some odd mental condition that is causing their pain. 

I don’t have Cancer, so I don’t really know if this is true. I suspect Cancer survivors would know better than I, but I do understand what my friend was trying to say. That it would be nice to have something that people generally understood and weren’t indifferent or downright cruel about it.

Unfortunately, we don’t get to choose what illnesses and diseases we end up with in life, all we can do is make the healthiest choices possible and hope for the best. Personally I’d rather not have any illness, but if I have to have one, then I believe that I ended up with Fibromyalgia for a reason. And no, that doesn’t mean I think I deserved this, because no one deserves to go through this. What it does mean is that I believe part of the reason I ended up with Fibromyalgia was because I could end up sharing my experiences with others and hopefully help create more awareness and a safe place for people with Fibromyalgia to learn and share.

If you have a loved one with Fibromyalgia, please don’t be indifferent to their plight. Take a moment and call or visit. Help with something around the house or just hang out and bring some laughter to your loved one.

Whatever you do, please show that you care and that while you may not be able to understand Fibromyalgia completely (really no one does, there is a lot of research going on and hopefully we’ll get some answers soon), you are there to help your loved one when you can and when they are willing.