I made the statement in one of my recent posts that “Fibromyalgia and chronic illness can be very isolating if you let it.” I wrote it in reference to a conversation I was having with members of my support group, trying to come up with ideas to encourage inactive members to attend. I wasn’t expecting it to hit a nerve with anyone, but it did, and I think it led to a very interesting communication between us. I want to share it with you to continue the conversation and also to applaud the commenter, Kathy, for speaking out and holding me accountable for my word choice.
Kathy
Okay, I’m gonna grump all over this one. “Isolating if you let it”. I didn’t let it…it dragged me away from my life and I was kicking and screaming the whole way (ask my husband!).
I did not LET myself get isolated…my “friends” did not understand why my body quit and my brain departed and they, almost to the last one, bailed on me. Thank goodness for the Internet. I am much less isolated now, but still not enough face time to suit me.
Invisible Chronic Illness is isolating in and of itself. There’s no “letting” about it. If this “Awareness Day” accomplishes anything I hope it instills a bit of compassion and possibly some empathy in people like my former friends so no one else “lets” themselves be isolated.
Grump over. It’s a bathrobe day
lousy excuse. I may regret spouting off like that…but you hit a bit of a sore spot. Sorry.
By the way…I love seeing something new every time I check out your blog! No pressure to keep grinding away of course…
My Response
Grump away Kathy. That is what this space is for and you are certainly entitled. Besides, how boring would it be if everyone agreed with me all the time?
You are right, there is so much about Fibromyalgia that is depleting and that is out of our control. A lot of loss and adjustment to loss comes with it. But your argument changes the context of the point I was making when I said “isolating if you let it.” Yes, FM changes our lives dramatically, and we do lose a certain amount of control, but let me use my support group members to explain what I meant. We all still have the ability to make choices. FM did not strip us of that.
I have 53 members in my group. I do not advertise the group. You would have to take the time to research to find it. Then once you have put forth that effort, you will have to take the time to fill out a profile and submit it to me for approval (I do this to protect the privacy and integrity of the group. You would not believe how many marketers think it is okay to JOIN a group for people with chronic illness just to sell their product).
My point is that you really have to be ready to find support and connect with others with FM to join my group. So why go to all that trouble and then stop there? At some point you have to decide to attend a meeting. At some point you have to honor the commitment you made to yourself to connect with others like you and show up.
Each of us at the luncheon on Tuesday could have used Fibromyalgia as a reason to stay home. None of us felt great that day, but we made the choice to attend. We did not LET our Fibromyalgia symptoms stop us from what turned out to be a very fun and cathartic afternoon.
This is the dilemma I face with many of my members. They call and e-mail me with all sorts of intentions – they plan to come to the next meeting, they want to come to the next meeting, but they do not know how to break out of the pattern of isolation they have grown comfortable with. It is safe to stay home. Going out to meet a room full of people they don’t know feels like a risk. Fibromyalgia is extremely depleting, but it does not take away our ability to make choices. Even if it is just to spend a few minutes on an online chat room. We need to not give in to the isolation.
The more isolated someone is, the more they feel like they are the only one feeling so bad, the only one who has lost so much, the only one who understands.
At each meeting, over and over again I see the faces of my members light up as they chat with someone and realize that a symptom or frustration is shared with the other member. I am telling you, these meetings are never sad or depressing. It is more like a bunch of scientist making new and exciting discoveries. The sound of laughter is a constant at the meetings. Who couldn’t benefit from that?
So when I said “isolating if you let it,” that is what I had in mind. FM may limit our choices, but it does not eliminate them. Every day we have the opportunity to make many choices that can affect and improve our lives, and to a certain degree, remaining isolated is a choice.
P.S. Please do not regret spouting off. You made the choice to speak up and state your mind. I say good for you! It would have been easy to read what I wrote and get frustrated, but not leave a comment. Instead you broke the barrier and started a dialog. Very healthy and non-isolating of you!
Plus it gave me something to think about. Word choice is very important and something I should consider when writing my posts – so thanks!
Kathy
That was very eloquent FH (now how’s that for a nickname?). Thank you for “letting” me have my temper tantrum and turning it into a teaching moment.
I do see myself in what you wrote, but I also see a lot of hope for the future… I got beat down pretty hard by the collision between my past life and fibromyalgia. Most of the time I feel like I’ve gotten over it and moved on, but obviously I still have some sore spots. Ouch.
I think I am moving towards a brighter and less isolated future. Not many people get a “do over” like this…
And I guess I have some researching to do. Thanks!
My response
No research necessary. You are in!
When I read that you feel hope for the future, it makes me feel hope! There are no quick and easy answerers with FM, we are all pioneers really if you think about it. Not that long ago diseases like MS & arthritis were exactly where FM is today.
The key is to come together on our quest for wellness. Whether it is in person or online, we need to build and strengthen the FM community, first and foremost so that no one feels alone in their struggles. There will be days when we cannot participate, but if we let those days turn into weeks, weeks can turn into months… Somewhere in that isolation hope will be lost. I want everyone with FM to have hope!
Thanks so much for starting this conversation! You have inspired me and I plan to share our dialog in a blog post.
Kathy really did get me thinking, and yesterday I jumped on twitter with this question, “Just had an interesting exchange on my blog about isolation. Got me thinking. What are some good online communities to join?” I got a lot of great responses, so look for a post with online resources soon.
What are you thoughts on isolation? How do you combat it? Is it a problem for you? Let’s keep the conversation going.
14/30
It is very difficult and, I have to agree that it isn’t always a case of “letting it.” Take my situation (I wish someone would), which will sound like a whine, but just is.
I was finally diagnosed with both fibromyalgia and ME/CFS last year, after suffering some pretty severe symptoms for between 15 and 35 years. Recently, I joined my local fibromyalgia support group here in the UK, however:
* The meeting place is 1.6 miles from the nearest station and I’m 1.1 miles from the station at my end. Even on a VERY good day indeed, 5.5 miles is an impossible distance for me to walk (and survive to live the tale!)
* There are infrequent bus services, but this involves changes, waiting at places where there are no seats (which I cannot manage) only gets marginally closer and I find bus journeys, with all the jolting, too painful.
* I don’t drive: I was forced to give up several years ago because of the severity of my symptoms.
* Taxis are prohibitively expensive, on benefits.
* I only moved back to the UK relatively recently and don’t know anyone here who could give me a lift.
I’m not at all comfortable with my isolation and am actually acutely aware of both the need and want to break it. I’ve joined a few local activities hoping to meet new people and just converse with humans again, but this same or similar list of challenges faces me each time. So far, I’ve been forcing myself to go to as many of these things as I can and, I’ve been suffering the “boom and bust” and terrible pain of relapses and post-exertional malaise afterwards, which each time get worse.
To add insult to injury, by trying, I’m then accused of having nothing at all wrong with me because I just “lay around” (in agony, of course) lazily, but suddenly I’m “able to run around all over the place.” Stagger would be more accurate, but all attempts to break my isolation result in a new wave of abuse from those around me who choose not to understand the nature of these illnesses, adding more stress that increases the severity of the relapses.
I’ve really no idea how to combat this isolation – at least not in the long-term, because I cannot see me being able to cope with pushing myself this hard and there not be severe consequences – under these circumstances.
Pamela, my “make do” solution was to join sites online. Invisible Chronic Illnesses has a really robust site with forums and chats and such and people from all over the world are actively participating there. I can give you the website if you’d like.
It is, at best, a partial solution…but it filled a huge void for me. I was incredibly lonesome, but I was pretty much bedridden during the winter. I made some online friends that I really enjoy talking to…we’ve even talked on the phone a few times.
I tried a support group up here in Washington that I KNOW is nothing like Fibrohaven’s. I couldn’t take all the whining and carping. There was just a dark feeling about that group. So online was my best alternative, I felt.
I’m not a psychic, but I predict that there will soon be a Fibrohaven blog providing some possiblities for alleviating the isolation…
Kathy