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From the heart - Fibromyalgia

I have Fibromyalgia.  I sat here for about 15 minutes trying to figure out how to start this blog post smoothly.  But there’s no way to say “I have Fibromyalgia” in a classy way.

If you read my blog regularly, you know that I have been fighting off extreme fatigue, migraines, and chronic pain for months now.  Two weeks ago I finally hit rock bottom with the pain.   My doctor and I have been working on a diagnosis for a few months – but figured it was just side effects of medications.  But after going through all my symptoms and doing a pain exam, I have been diagnosed with Fibromyalgia.

For those of you that don’t know what Fibromyalgia is, it is a chronic disorder characterized by widespread pain, but includes many other symptoms.  My most prominent symptoms are daily migraines, trouble sleeping (that’s putting it mildly), extreme fatigue, and chronic pain all over my body.  I am also sensitive to light and noise, as well as I have symptoms of IBS and restless leg syndrome.

The cause of Fibromyalgia is unknown, although it is said it can rear its ugly head from stress.  It is most common in women in their 20’s.

One of the symptoms of this illness is moodiness and depression, which I already have.  This week has been EXTREMELY hard for me. I am very good at putting on a happy face and pretending that I’m okay.  I feel as though I’m a burden to people around me so I try not to talk about it.  That’s human, I guess.

Like mental illness, Fibromyalgia is an illness you cannot physically see.  It is incredibly misunderstood and extremely frustrating for those who have it.

My top 3 statements I recommend NOT to say to someone with an invisible illness:

1. “It could be worse.”  No. Just no.  This is not even fair to say.  Just because one illness is awful, doesn’t make the other not awful.

2. “It must be nice to relax all the time” or “I wish I could relax/take naps as much as you” or “you’re lucky you get to relax.” This is the one that gets me the most.  We don’t enjoy relaxing or taking naps.  I would way rather be overly busy doing absolutely anything other than taking a nap during the day because I only slept a half hour the previous night or laying on the couch because my whole body feels like it’s dying.  So please, I’m begging, know that YOU are the lucky one.

3. “At least you have a diagnosis.”  Yes, at least I have a diagnosis.  But that does not make it better.  Please, do not make light of the fact that we are in emotional and/or physical pain by letting us know how awesome it is that we know what we have.

Invisible illnesses are difficult to understand if you’ve never experienced them yourself.  I try to take this into account on a daily basis.  But please, sometimes we just need a “that sounds awful, what can I do to help?” or a “You are so strong, I wish you didn’t have to deal with this.” 

We wish so badly we didn’t have to cancel our plans or sit on the couch all day for a week or long to be able to go to the gym just once that week.

Even though I'm feeling hopeless right now, I know there is hope in the future.