Support Systems…Take Them Or Leave Them?
April 22, 2007 by laura
Filed under Diseases & Conditions
When not feeling well, I try really hard not to be a burden on others. I tend to keep to myself and not make a lot of demands on other people. I wish that the people in my tribe would understand why I do this. If they don’t understand, well I will clue them in now…..its out of respect. I don’t think they need to be around me, when I am coughing up my lungs or haven’t slept in weeks (definitely my mood will be horrible at that time). I don’t need to be pitied by people. I like having my friends think that I am a fun and interesting person, and not think that I am someone who sounds like she has the death rattle.
I also wish that they would understand when I am not feeling up to going to a party. Or understand when I can’t see the world as all sunshine and rainbows. It doesn’t help me to fake feeling good, for their benefit. Masking a problem, doesn’t make it go away. I am not asking for positive reinforcement.
Which reminds me, I read a little something today in one of my favorite books that I use as a teaching tool. This actually made me say (almost yell) the word “YES!” out loud.
The book is The Inner Game of Tennis, by Timothy Gallwey, and in it one of his tennis students has an “a-ha moment” regarding positive thinking/reinforcement. She states that positive reinforcement is basically useless and causes head games because they are essentially criticisms disguised as compliments. Instead, one should just be. Observe what you are doing….and stop the thinking. Just do…or be…or whatever, just stop the thinking.
This is how I view my health situation. Maybe I am being paranoid, and maybe not. But I do know that in my own support system, if I am not “performing” to their expectations (meaning not taking their advice or am bailing on outings) then I am not trying hard enough….and these people take it personally. I definitely have enough going on, without worrying about what my tribe is thinking.
I know that I am doing everything possible to get well. Should I be caring if they believe me? It would be nice, if they could get past their own ego’s and realize that my illness or wellness situation (take your pick….either you are a glass half full or half empty or just half, kind of person) is about me and not them.
And so I am going to end this post with just this little note to my tribe….I understand that you are frustrated. I am not the same fun person that you all used to know (its temporary, but I am changed), and if you can’t understand that I am like this for now, and make the decisions that I have made, because I feel like I have NO choice……then the answer to the title of this post “support systems, take them or leave them) is leave them.
To the 2 really great people who are still in my life (real life that is), and have accepted me for me…..I thank you, and appreciate you. I consider myself to be very lucky to have you both in my life.
and so now I continue to move on……
“But I do know that in my own support system, if I am not “performing” to their expectations (meaning not taking their advice or am bailing on outings) then I am not trying hard enough”
This begs the question: is such a system really a SUPPORT system?
Jennie,
I agree!
Which is why the answer was “leave them”.
support comes in many forms….and it just so happens that this form (by which i mean the lack of support) wasn’t working for me.
I’m new here (Hi!), but just had to say that this post was so on target for me. Particularly this bit –
“I know that I am doing everything possible to get well. Should I be caring if they believe me? It would be nice, if they could get past their own ego’s and realize that my illness or wellness situation… is about me and not them.”
This is a constant battle for me. A recent incident with my SIL, and then a tough discussion with my sister, have left me still shaken: I thought they were getting it, that they knew but it’s obvious that they don’t. 13 years into this, and they still have their doubts.
So frustrating.
I have been having some issues replying to the comments on this post….here is take 5.
Hi NTE (and welcome!)
sometimes reading these comments are a little bittersweet. On the one hand, someone who is reading my blog understands the issues I am having (yay!). On the other hand, someone who reads my blog is having the same (or similar) issues that I am having (not yay).
The really great thing about writing cfs squared, is the support that comes along with it. Some really great people read and comment on this blog…and we are becoming great friends.
So, welcome to the group
Dear Laura:
How wonderful that you are able to work even though you have CFIDS. I am so sorry that people try to judge you and your experiences with this horrible illness. My spouse has been disabled with CFIDS for the last 8 years, and has been ill for 18 years. Your blog is really cool, and it’s nice that you use some of your energy to help other people understand the hell that is CFIDS.
I think our society in general has been deluded by the so-called “positive thinking” and “laws of attraction” fad. While I don’t doubt that it’s better to be positive than negative, I totally reject the idea that people who are sick are ill because “they wanted to be on some subconscious level” or “they attracted this” or that they stay ill because of some problem with THEMSELVES . . . like bacteria and viruses don’t matter? Please. If wanting to be well were enough, NO ONE would have this illness.
Some people just don’t realize that no one . . . and I do mean NO ONE . . .WANTS to be sick!! Hellloooooo!!!!!!
Wow. Thanks for letting me vent that.
Just “being” is a wonderful thing to do, and it’s harder than one might think. In the CFIDS journey that we have been on, I am grateful that we are UNABLE to fall into the modern trap of trying to fill every minute with “something.” Sometimes, just “being” is all one can do . . . and that in and of itself, is quite enough.
Best wishes,
Donna Mirabile
Hi Donna,
Thanks for the lovely comment. You must know a whole lot about CFS and chronic illness from being a care giver and a pillar of support for the last 18 years. It must be very difficult to watch someone you love struggle with illness. And then get better, and then struggle some more.
I am very lucky that I am able to work full time plus some. I wish I had an answer on how I did it….just a bunch of things all came together. I do know that I have been having a hard time for the last 2 months, and took some time off~ and it made me crazy, because staying at home resting isnt helping the situation, so I may as well go to work.
Sounds like your views on “positive thinking” and being rather than thinking, line up perfectly with mine. Have you read Gallwey’s Inner Game books? I am a super big fan of his, and while I haven’t come across any of his writings where he addresses living with chronic illness….he does talk about aspects of life (through his topic of choice) that can help all of us.
His, Inner Game of Tennis book, is a very big help in my classical guitar teaching practice…and also with just living my life. You may find his works really interesting.
I am glad you are enjoying this blog. Keep in touch!
I went to a support group once . (fibro) The participants were either married or married/retired. I am single. When I told them I work full time the response was well you can’t be as sick as we are !!! When I told them if their choice was work or be homeless they would work and give up having any real life like I do. Of course they said I was wrong. So much for support. If people sufferring from the same illness have no empathy then how on earth would health people? I never went back.