Sunday, July 24, 2011

The Way We Were....

Due to events that have been happening to the members of my support group and in my own family, I find myself contemplating why it is that our parents and other family members have such a hard time accepting our Fibro/CFS and the fact that there is no miracle cure that will return us to normal.

They express their concern to us on a regular basis... telling us that if we eat better, take supplements, or just get up and move that we will feel better. The gut reaction for most of us is to put up large and rather thick walls, because this advice just makes us feel like our family members just "don't get it."

I think it boils down to something extremely simple... they just don't WANT us to be sick. They WANT us to be healthy, and having to face the fact that the child that they raised for so many years is doomed to spend the rest of their life in pain is extremely hard for them to take... so they grasp at straws, trying desperately to heal us but only driving us away. There is a strong desire within them to pretend that our illnesses do not exist, hoping that by ignoring the pain it will go away.

What are your thoughts on the matter?

Thursday, July 7, 2011


I've spent a lot of time in the past few weeks reflecting on relationships, and how Fibromyalgia and CFS (and other chronic illnesses) seem to be a death sentence for them. Mostly, I've been thinking about how strongly illness affects friendships.

Growing up I never really had many friends... and what friendships I had never really lasted longer than a week or so. Since I was always sick, it was really hard to create a friendship with someone who didn't understand my health, and therefore I've always only had one or two friends at a time (The same ones from fifth and eighth grades, too). I ended up collecting quite a few online friends by the time I was 13, and found myself to be more comfortable with them than I ever had been with anyone in person... there was just nobody “in real life” that got me.

A few years ago I thought I had it all figured out. I had a few close friends surrounding me and I spent countless hours with them. I was really happy. I felt loved, special, and like a normal person. There were people that wanted to me around me, and it was WONDERFUL. My self esteem skyrocketed, because I mattered to someone. Someone thought about me when they weren't with me, cared enough to try to make me laugh, and would come visit me if I wasn't feeling well. People were willing to make the adjustments required by my health in order to have me a part of their lives, and vice versa.

But then sick 'ol me got even sicker.

When Fibromyalgia became the boss of my life, I couldn't even maintain the few relationships I had anymore. Everything around me crumbled, and the friendships that I had worked so hard to develop and nurture took a violent crash into the abyss. I couldn't hang out, I couldn't go anywhere, and coming to my apartment and watching me writhe in pain was more than most people could handle. (Although not many really tried... I admit I do have a couple "real life" friends that have been very supportive of me, especially lately. They know who they are, and how much I appreciate every bit of effort they put into taking care of me.)

Of course, there was also the unspoken trend of “This is BS, Fibro isn't real, all she needs to do is get off her duff and things will be better, blah blah blah” from the people in my life with imaginary medical degrees. Anyone that said “Push through it” and “Suck it up, everyone hurts” was making a choice not to be a part of my life by refusing to learn about what I was going through. Most of these people I ended up having to remove from my life all together because their callousness was toxic to me. Some just couldn't handle seeing me in pain, and slowly backed away, saying that we could resume our friendship when I was better (which we know is pretty much “never.”) Once again, I was alone.

After being a member of a support group on Facebook for a few months, it hit me.... I was trying to develop and maintain all these normal friendships with all these normal people who I had very little in common with anymore. I was making myself miserable by the constant reminders of what I couldn't do and couldn't have. I cried constantly because friends were going to the beach and I hadn't been invited (not that I could go anyway, but being thought of would have been nice...).

The support groups first taught me that I wasn't alone. There were other people who were in the same situation I was.... they had the same health problems, they spent days in bed because the pain was too bad to move, they took 3 baths a day, swallowed handfuls of pills, and were as lonely as I was. It was nice to have someone to talk to, but I still felt like my life was lacking. I was still lonely, although less so, and I was still every so depressed because of it. My fellow Fibromites were great acquaintances, but I still didn't really have friends.

Then it hit me. Why the shouldn't I put all the effort I had been using to mourn my dead friendships into developing new online friendships like the ones that got me through my teen years? It's not like I can go anywhere or have a normal friend relationship since I'm so unstable right now. But these women in my support group... they really got it and knew what I was going through day to day. And when I met Brandi and Torill, things started to change for me really fast... especially after launching the Silver Lining of Fibro support group. I began feeling like I had worth as a human being again, that I was valuable, and loved, and needed, and special.

Because of the experiences Brandi and I have had with our personal friendships and fibromyalgia, our “mission” was to create a support group that would be a group of friends, rather than a bunch of random women complaining that they hurt all the damn time. It would be a place to talk about our kids, our horrible experiences at the grocery store, but mostly to learn how to have a real life while living in pain. As our ties to each other have become stronger, we've taken them offline – creating a snail mail club, making each other's phones blow up with texts... and for a lucky few that live close together, planning get togethers and lunches. Since our members are around the globe and we are all a bunch of insomniacs anyway, there is always someone we can talk to, to cry with, or to make laugh. There is always someone to send us a mental hug.

Recently my depression came back again, with its gaping toothy maw open and ready to eat me alive. I felt lost and extremely alone. My husband realized I hadn't talked about “the girls” in the last few days, and he asked me if I'd been talking to my support group lately. I realized I'd been hiding from them... trying to keep my depression from leaking out into their lives. (Something I frequently yell at the other women for doing.) I took a deep breath, got online, and confessed my emotional state. Within seconds I had two texts and a flood of messages from my new friends asking how they could help me, trying to set up a lunch date with me, and just saying “I love you. Stay strong, you'll get through this.”

Each message was like a ladder rung, giving me the support I needed to climb out of the hole. Yesterday morning I woke up and the world was bright again... and I knew I was gonna be okay.... simply because I had rediscovered the Silver Lining to my Fibromyalgia... FRIENDS.