Do You Want to Get Well?
March 18, 2008 by laura
Filed under Diseases & Conditions
Last night, I had an opportunity to speak to a group of CFS Sufferers. I am not a big fan of support groups (outside of 12 step programs, and then again not exactly a fan – just believe they are necessary). I suppose one could argue that this blog is somewhat of a support group – but then again, I am not asking for weekly attendance – or participation (although I love it when you do). I don’t really have much to do with people feeling sorry for themselves, and from my experience, that is what support groups do.
But last night, a group asked me to speak – and so I did. Will I go back as a member, absolutely not. Will I be invited to come back to speak – it is doubtful. A group made up entirely of women much older than myself, who had absolutely no desire to get well, with the exception of one (interesting to note that she was around my age). What makes me think this? Well the first thing I saw upon entering the lecture hall, was a very large table filled with pastries, 2 urns of coffee, and bottles of soda pop and sunny delight. Interesting fare for people who are suffering from chronic illness – in which diet can hugely affect ones “performance”. Yea Yea – I know about my own coffee addiction – but really coffee was the least poisonous thing in that environment.
So I start my talk…and it is a good one. Trust me on this. My topic was “You Know You Best – And So You Are the One In Control”, something that I have written on this blog more than once. I honestly thought that people would respond well. I was mistaken. Perhaps my anger is clouding over my memory slightly, but when given an opportunity to speak, the first thing a member of the group said was – “you can’t possibly understand what this is like – even my husband doesn’t believe me”, and so I asked her what she does, thinking that may perhaps give me a way to understand. She replies, “well I am sick – I go to the doctor and attend support group meetings”.
WHAT????? Who says that because you have been diagnosed with CFS it means that you do nothing. If that’s the way you think, then what kind of hope do you have. No wonder the husband doesn’t understand. This woman goes to her doctor to get pill refills (she shared that info with me-its not made up), and then goes to weekly support meetings, where she can consume massive amounts of sugar, and dial in to how sick she is, with others who in turn feed the addictions.
I don’t have to tell anyone here, that this is not going to work. You are not going to get better, unless you want to. No amount of passive pill popping and commiserating is going to help. My breath was wasted last night….and as a result, it upset me a great deal. I admit that the timing of my talk and how I am feeling was not great. Because the result was not what was expected, it made me feel a lot worse than I normally do…(I am now bouncing back). However, it did help me to figure out some things.
For example:
I can not be responsible for anyone else’s wellness except for my own, talking about being ill -makes one feel horrible a lot of the time, if people are happy the way they are- then who am I to try and bring about change to their lives.
But for the woman at that meeting last night – and all the rest that nodded in agreement with what she said, I have just one thing left to say.
Do you not miss the woman you used to be…or the woman you had planned on becoming?
**Picture Source – flickr
Laura, God, you sound so much like me it’s scary! I would have probably come out and said what they were eating and drinking were not helping. I get very wound up when speaking about chronic illness and I can’t tolerate people who do nothing to help their situation. I too am not perfect and I do a lot of things I shouldn’t, but I don’t whine around all of the time like a lot of people do. I have had to cut off communications with a few people I talked to a great deal because they didn’t want to get well. They wouldn’t listen to any suggestions I would try to give them. They just want someone to feel sorry for them. That someone is not me. If you aren’t willing to help yourself somehow, don’t expect me to.
Sandy,
I did mention the pop and pastries on the table, and they looked at me like I was crazy. Yes I am addicted to a substance known as caffeine – but I know enough not to drink it at 8pm (and lets not forget about the sugar!).
I am over the whole “feel sorry for me” thing. If these people let go of that, they might even realize that there is some good stuff that could come out of it (CFS).
Cut off communications…..thats a good idea. I won’t let these people drag me down, any further than they already did.
We have a saying at work for people who can’t see beyond themselves. “thumb sucking whiney babies”
Your superior attitudes speak volumes about what is wrong with the world in general. Very sad. The world is not a better place with the observations you’ve made.
Now, you know I’m generally an optimistic person (ignoring bad crashes and hormone imbalances…), but there’s an important question I ask myself at least a few times a year, just in case: What do I get out of this? (sometimes “this” is being sick, sometimes “this” is being unemployed, sometimes “this” is being uncreative or living in a messy home) You know what? There are always things to cling to, even if they are negative. Going to new places, stretching new muscles, trying new things always has an element of risk, that especially when you aren’t feeling yourself, can be huge. Those women may have been feeling very vulnerable and unsupported – and they thought that cutting back on all their obligations and going to a group with people who understood them would help those feelings. Sometimes we forget to step back and ask if we’re getting out what we expected to. Maybe they are too afraid to ask, because if THIS isn’t working, there’s obviously nothing left – if they don’t feel safe and supported with no responsibility and in a support group, then they never will.
I’ve had a hard time keeping up that fine line between being educated about this illness, and not dwelling on “being sick”. Since it is largely self-administering, I can’t just sit back and wait for my health care team to tell me how to get better (which I can understand is an attitude that many were brought up with, especially in the days when girls “couldn’t do science”), so I do have to delve into all things CFS. Over the years, I’ve managed to tailor my sources to be the most balanced, educated, and forward looking. But I also have to step back and say “ok, I have limits like every other person on the planet – what can I do with them?”. And that’s not a step that everyone can take, especially if they don’t have the resources or the supports to try and fail. I’ve been very, very lucky that my family-of-origin and my husband have from the beginning acknowledged that something was seriously wrong, and they are the first to tell me to cut myself some slack. I don’t know how I would handle all of this, if I had to spend what little energy I had in keeping up appearances so that I didn’t get berated by those who are supposed to love me most.
So while I agree with you on the support group issue (well, at least the ones like that one!), I can only feel sad for the women who are stuck. Your way may not have been what they needed, but I hope they find it, whatever it is.
Do you want to get well and do you want to DO WHAT IT TAKES to get well are two entirely different questions. I see this all the time, sorry you had to waste your time with these folk!
Maureen,
interesting perspective.
Kyle,
I am really not sure what you are so angry at.
Is it that people don’t want to get well – and/or do something about it (achieving wellness). Or is it that there are people who do work at getting well, and live a positive life -regardless of how they are feeling.
I don’t think that asking people to take responsibility for themselves (and this includes the illness they are living with) is what is wrong with this world.
Jenna,
I tend to agree with you on most of what you said. The road is a way more difficult when your family does not support you.
But I really do believe that you need to want to get better, and be willing to do whatever you can to achieve that. It is not going to come, unless you work at it. What I saw the other night, were women telling each other how hard they have it….each woman one upping the other one. Perhaps I came on an off night – but the impression I got, was that this is what its like every meeting. Of course, it is possible that I am wrong (don’t think so).
What I saw was people hurting themselves….and it hurt me to watch them.
nick4rr,
while the two are intertwined, you are correct – they are very different. I am pretty sure, that you can guess what I suspect the answer is to both questions from that night.
I did waste my time, but it was a good exercise in public speaking for me….and I have just decided to concentrate on what was positive about the experience. The best thing for me, is to let go of the “bad stuff” that was inflicted.
Thanks for the comment!
Wow! This is an interesting topic! I think there are pros and cons to support groups. I’ve never been to a CFS support group mainly because I hate to focus on my illness and prefer to spend my very limited energy catching up with friends and ‘normal’ life. I have to admit (slightly shamedly!), I have always thought that an M.E. support group would be a bit depressing and full of whiney moaney people. However in the past few months I have been attending a Yoga therapy class for M.E. and its my first time meeting other people with the illness. I found the experience very positive because I found the group of people were all trying different things to get better and were able to share tips and experiences.
On the other hand the support group you spoke at seemed to be negative, I can’t imagine attending would help anyone get better or even feel better. I suppose that it really depends on who ends up in the group and what their attitudes are to start with.
The only other thing I can say is that we do all moan at some stage, I know that my family bear the brunt of my down days, and my rants! Maybe for these people the support group is their outlet for all that frustration and sadness. It wouldn’t be my thing, in fact I would find it depressing but whatever helps you get through it! Right?!
me again! I just re-read your post and had to add this!
You are right, we do need to do whatever we can to make ourselves better. And we need to surround ourselves with positive people who will help us get better not drag us down.
I feel sorry for those women who feel so powerless that they don’t even try. I think we’ve all been there at some stage even if it was just for a few minutes or hours! You are right, you can’t change their attitudes. Its frustrating, but well done for trying to help. You never know, maybe one little thing you said will help someone in the group.