"I know someone else with Fibromyalgia..."

DISCLAIMER: This post isn't my usual upbeat, happy, ruminations. It's of a more serious nature. Actually, it's more of a rant.

I have fibromaylgia syndrome (or FMS, aka FM.) I have quite a few friends who have been diagnosed, as well. Now, some of these people I met in my FM support group, but others were my friends long before either of us were diagnosed. In fact, some of them have been my friends since childhood.

One of the biggest complaints/questions I hear at my support group is how to make friends and families understand our condition. Many of my friends are having a tough time communicating what they're going through in a constructive and meaningful way.

One of the wors things anyone can say to a person with FM is, "I know someone else with Fibromaygia, and they..." - followed by some wonderful thing that person has accomplished with their life. Commenting about how well other people with FM cope just ticks me off; I think it's the same for everyone with FM. Now, sometimes those kinds of comments are well-meaning and hopeful, but many times it just comes off sounding like "they can do such-and-such, why can't you?" making the person with FM feel even more helpless and dejected. Especially if it's a comment which is used as a weapon by a spouse or significant other.

At one of my FM support group meetings, a woman was talking about a conversation she had with a friend or coworker or some such. The gist of the conversation was that the person she was talking to had a sister-in-law with FM who was coping beautifully and even training to run a marathon. The woman with FM responded, "Well, bully for your sister-in-law!"

I think we've all run up against people who try to compare us to someone else they know with FM. Heck, I know some people in our FM group resent me because I've made more progress than many - my friend Cindy included! But even I have had my father-in-law and his new wife tell me to go out and get a job, etc., because someone else they know has FM and has never missed a day of work in his/her life.

All I can say to anyone who makes these kinds of insensitive remarks is this: FM is a very unique condition. The symptoms and triggers are unique to every individual who is diagnosed with it. Hence the treatment and response time for everyone is going to be different. It's like any disease, in that, if you catch it early enough, you can stem the tide and get the upper hand on it quickly. However, with the difficulty of diagnosing it (whether because of the cyclic nature and vagueness of the symptoms or because of physicians who just won't listen or believe that it is a real medical condition), it can take YEARS to diagnose, meaning that it takes all that much longer to get a handle on the pain and find an effective treatment. After years of having your body on that downward spiral of pain, it can take just as long to work your way up the spiral to good health again.

I would also ask these commenters how well they really know how these 'other people with FM' are doing? Sure, our spouses have seen the worst with us; they see us in our worst and most vulnerable moments. Do they see these 'other people' in theirs? I know that when I was first diagnosed, I was so relieved in many ways because I finally had a name for the beast that had been plaguing me for so many years. I wrote an e-mail to all my nearest and dearest friends; the response I got was shocking. Not that they were unsupportive or unbelieving; simply that most of these people who I'd known for years had NEVER seen me have a bad day! I took a beat and thought about that. Sure enough, I had to admit that I never let anyone see me on anything but a good day. On the bad days, I'd curl up in my cave, licking my wounds by myself, until I felt better and able to face the world with a cheery countenance and a bounce in my step. It's our nature to withdraw when we're feeling poorly. Honestly, when we have the flu, we don't go out in public; it's no different with FM, but mostly because we simply CAN'T get out the door! One day I was surprised by a friend, and I came to the door in my pj's and disheveled hair. She actually took a step back, because I was always neat as a pin, even to work out! But that day I couldn't hide the pain I was in, and she couldn't help but notice it.

All that to say, it's unfair for anyone to say they know how others deal with their FM, because unless that person is really in their life, living side-by-side with them, they have NO IDEA how they really feel. All they know is the face these people put on for the outside world.

Sometimes I think that we do our friends and loved ones a disservice. We try so hard to fight our FM. We try so hard to let other people only see our 'good' days. We try so hard to be positive that we don't want to expose ourselves (and our partners) to other people with FM who are in a worse situation than we are. Have they sat in on one of the regular monthly support group meetings? You know, the ones that usually turn into a bitch-fest? Have they seen the people who can't sit still for more than 20 minutes and need to go stretch in the back of the room? Have they seen the people who have tried drug, after drug, after drug and are still in excruciating pain? Heck, have they taken the National Fibromyalgia Association's clothespin challenge?

Do they understand in any way how difficult it can be to be in CHRONIC PAIN every day. To never know when you wake up each morning whether you're going to be able to move or not? How frustrating it can be to forget basic vocabulary, much less know that your once-sharp mind can't remember where you put your car keys unless you have a ritual you follow like clockwork so they're never misplaced?

In short, have they tried to see this condition from the perspective of an FM patient AT ALL?

Part of what is so frustrating about FM for me is knowing how much FM has changed me. People described me (and still do on my good days) as exuberant, energetic, and vivacious. I'm up, positive, and happy - almost annoyingly so at times. When I'm involved in something, I'm giving it 110% and nothing seems to slow me down or get in my way. Heck, I was someone with so much energy that I'd run up the down escalator in the mall at the end of a long day's work, just because I could!

But FM has taken that from me. Sure, some days I can still rally myself and be my old me. But what my extended family and friends don't see is the recovery time I have to build into my schedule afterwords. I can still do a 'full day' (from 7 am to 11 pm) at Disneyland, but I'll sleep most of the following day, if not two. I love the days when I can run around with my grand-nieces at the zoo - forgetting my FM for a day. But I'll start the day with yoga before I leave the house, and you can bet I'll be taking my pain pills that night and making sure I practice yoga daily for days afterwords. I'll drive my parents to family functions hours away (after I've done yoga, taken my pain meds, and slapped a heat pack on my low back), but I'll fight back the tears of pain as I drive, just waiting to get to our destination so I can let the joy of being with family wash over me and drive the pain away from the forefront of my consciousness.

In other words, we can do ourselves or our partners a disservice by trying to be the hero. While we don't need to overwhelm them by constantly complaining about every little (or big) muscle spasm or electric current of pain that shoots through our bodies, we do need to communicate. If they're truly going to support us, I think they need to be able to understand and empathize with us. They need to see what the 'real face' of our FM is, and understand just how hard we're trying to fight it.

After all, I'm only 38, and I have a lot of life ahead of me. I've had FM since I was 17, even if I was only diagnosed 4 years ago. I'm bound and determined to be a person with FM, not to let FM have me. I'm grateful and blessed to have family who is loving, understanding, and supportive. And I wish the same for everyone else I know with FM. The reality, however, is far different, as up to 80% of all marriages in which a spouse has FM end in divorce. FM is a chronic condition I'll be trying to manage for the rest of my life. The good news is it isn't terminal. So if I'm not going to die from it, I won't let it take over my life.

My point here is, before you make some comment or comparison to a person with FM, ask yourself: Would you say something like that to a person with cancer or diabetes? FM is every bit as real as any other chronic condition. Yet unlike people with cancer or diabetes, because FM is so 'new', patients with FM have to convince their families, friends, general public, and sometimes even their own physicians, that Fibromyalgia is a REAL MEDICAL CONDITION. So please, think about what you say to a person with FM. Make sure it's said in a loving and supportive way. Educate yourself about the syndrome. We're having a tough enough time fighting FM. We shouldn't have to fight our family and friends, too.