Tuesday, May 12, 2009

Loving someone with fibromyalgia

Two months into our dating, as we were sitting in a hot tub at Breezy Point resort in northern Minnesota, Michelle told me that she had something to tell me. Now, I wasn't sure where she was going with this, because she looked very serious and sounded a bit ominous. Frankly, I thought I was getting dumped. She looked into my eyes and told me that a few months back she was diagnosed with Fibromyalgia. Now, I was a bit uncertain as to what it was. All I knew at the time was that a very difficult to diagnose rheumatic syndrome, and had a pretty negative connotation regarding the (mostly) women who had it, or who said they had it.

I wasn't afraid, I wasn't turned off, I wasn't overly scared, but I knew that in order to continue our relationship, I would have to learn as much as I could about it. I did some cursory searching on the internet and started to freak a bit. Reading about women who had to leave their jobs, had to go on disability, how much worse it got after having children and how it really impacted their day to day lives scared me. That being said, I wasn't going anywhere. I was in love with this woman and would face it every day with her.

Michelle gave me books on the subject to read, and while I didn't bury my nose in each and every one, I read quite a bit of each of them, trying to get as much information into my head as possible so I could understand what I would be facing having her in my life. Reading how certain types of weather, or stress, or lack of sleep could bring on a flare-up, I went a bit crazy. I acted like the typical 50s father-to-be who won't let his pregnant wife do anything for fear that she'll over exert herself. While I thought I was being the good boyfriend, then the good fiance, then the good husband, as it turned out, I was driving her nuts and acting as if she was a delicate little flower. All she wanted was to be treated normally. That concept is still difficult for me to grasp.

I try to do as much as I can to alleviate stress in her life. I figure since I have no control over what happens during the work day, I can at least make sure that when she comes home she doesn't have to worry about anything, and she can rest when she needs to rest, nap when she's tired and when she has a flare-up I know that she needs a bit more from me, whether it be a light massage of her shoulders or calves or just to be left alone so she can rest.

It took her a while to let herself be vulnerable with me regarding her Fibro. Often she wouldn't let me know when she was really hurting, and I'd ask her if she was ok, and she's blow me off or just say "I'm fine" even though I knew she wasn't. This is the single hardest part of living with someone with Fibromyalgia. When you look into their eyes, or hear their voice and you know they're tired or hurting and you can do absolutely nothing to alleviate their pain. Almost 10 years later and it still pains me to see the woman I love hurting. I know that the flare-up will pass, but during those times I just want to hold her and tell her everything is going to be ok.

Now that we've been together a while, and thinking about starting a family, the first thing I had to do was to partake in some real soul-searching. My first fear was that going through pregnancy was going to make her miserable, far beyond the normal "wear and tear" or a typical pregnancy. Secondly, I wanted to speak to specialists to find out the possibility of a genetic component to Fibromyalgia. Michelle kept telling me that it wasn't genetic, and that it couldn't be passed to our children, but I needed that corroboration from a doctor. Michelle and I both spoke with my rheumatologist and he alleviated my fears. He told us that Fibro is not a genetic condition, at least not as they understand it today. Hearing this removed that fear, but I am still concerned about the effects of pregnancy on her body.

Lucky for me, my wife is an incredibly strong woman. She amazes me every day with how much she fights through, suffering from Fibromyalgia. She never uses it as a crutch, hates to admit how much she hurts when she is having a bad day, and is getting better and better every year with letting me know when she needs me.

Fibromyalgia isn't a curse. It isn't something from which one needs to run screaming, and it isn't a deal-breaker. Loving someone with FMS takes patience, it takes strength from both partners, and most importantly it takes openness. Openness to learn about the symptoms, openness to talk about how you are both feeling, and openness from the person afflicted to be vulnerable and reach out for help when it's needed.


Candace said...

I just discovered your blog and was struck by this post. Thanks for letting everyone see it through your eyes. And I can attest to the fact that having an understanding and patient husband is A MUST when living with Fibro. Kudos and Thanks.

Rochelle said...

It was nice to hear about this from "the other side of the coin". I appreciate hearing what you had to say here, and the way that you care so much for and take care of Michelle. I just ran across her the other day and I look forward to reading more from both of you.

Jon. said...


Leonard said...

Thanks for a great reaad