Tuesday, April 27, 2010

Gripe Session

I need to have a gripe session. I promise to keep it brief, and I truly hope not to offend ANYONE, but please remember these are my current thoughts due to my situation and this is the only place I have to vent them.......having said that........

Do you ever wish you had been diagnosed with something else? Anything else? If I had been diagnosed with another disease that was well heard of and well understood, I don't believe for a moment that my family would still expect me to work full-time, take care of them, listen to their problems, and pretend like nothing is going on. Wouldn't they call to see how I'm doing, wouldn't they bring over meals, wouldn't they support every decision I found I had to make for my health?

But for some reason with CFIDS, they choose to keep their head in the sand, to make no effort to UNDERSTAND, to ignore what is so obvious in front of them. In some cases, they choose to simply not believe or to pretend that certaintly I will bounce back any day now.

They expect me to hold off on cutting back hours until this goal has been met, until this has been sorted, until THEY are ready. They get upset when I have to tell them - no I can not help you with X or be there on this day, or even listen to you whine on the phone for an hour about your problems, but yet NEVER ask how I am.

Fortunately, fibro is a bit more understood now (I'm certain due to a particular drug that is being marketed for it, but still at least it's being accepted), but with CFIDS there is no drug, there is no advertising, there is just alot of disbelief. In fact, I have a family member, who has a friend with Fibro, she will call ME to complain about something because she doesn't want to bother her friend who is suffering so greatly with Fibro - (anyone else shaking their head?).

I just want to be treated equally, I want to be understood, I am sure I am expecting too much.


  1. Sadly you're experience is not unusual (and that's putting it mildly). It seems to be a common experience for PWME to feel or be abandoned. Even now, 10 years after diag. I have family members who insist I am depressed and should kind of pull myself together. And 'friends' have disappeared long ago...well apart from a few. Its the same with all illnesses that people donlt understand or are scared of . I can't tell you the number of life-long friends who disappeared from my father's life once he had Alzheimer's. People are just scared and confused.

    It's a hard road you're on but you have to try (easier said than done) to remember the consequences of tkaing on more than you can handle. The effects are often lasting not transitory and 'get betterable' --- so hang on in there and try to be assertive, look after yourself. I sense that you are the provider, the nurturer, the one that everyone comes to and relies on (seesm to be a common trait amongst us all) and it takes a while to learn to say 'no' or 'not at the moment' You have support here.

  2. Thanks Cusp -

    First a special thanks for reminding me that I do have support here and throughout the online community. I am the ONE that takes care of everything for everyone else (I have also noticed this common trait - which makes me even angrier if anyone suggests that we are just lazy etc.) - and it is difficult to say no - however, I'm working with my therapist on this and have made great strides.

    I'm very sorry that even after all these years you are not completely understood and I am sure it would be the same for me (and most of us). I have already lost friends, but realize they weren't TRUE friends then, but the family issues are the most difficult to swallow.

    I am trying to look after myself, so much adjustment, so much rethinking, all while dealing with ongoing symptoms and new ones - no wonder, I feel a bit overwhelmed.

    Thanks again - I honestly take all your suggestions and comments to heart.

  3. Oh yes ... that is all too familiar ... I know that when I was diagnosed I had wished it had been HIV instead of CFS because there is treatment for that and because EVERYONE would take me seriously.
    I was talking to a very old friend of mine yesterday who has had cfs for about 16 years. He uses the term 'Norbals' to describe everyone who doesn't have CFS hahaha and I love the term! He was telling me that over time he let all of his friendships slide and drift away because they just don't 'get it' and he found it increasinly devastating to hear them complaining about little daily things as though they had a debilitating disease (like us) ... and also over time he couldn't stand listening to what a borng time they had on the weekend at the beach or going to the movies etc etc ...
    I kinda find myself in this place now. Someone complained to me about going to buy groceries the other day and i was thinkng how much I would LOVE to be able to get to the shops and buy my own food, something I have not done since last Decemeber.

    Go ahead and whinge girl ... you have EVERY right!! xx

  4. Lee Lee -

    Thanks, I felt bad for wishing I had something different (worse), but you understood exactly what I was saying. It is EXHAUSTING to listen to people complain about day to day things (especially one particular family member of mine), she has no idea how she will "find the time" to go the store, pick the kids up from school, etc. - her life is SO hard (rolling my eyes - these are her words) - it's everything I can do to not snap back to be honest.

    Thanks for understanding (as always).

  5. Glad to hear you are seeing a therapist - i think with the situation with your husband you will need help to work this through with him and stay assertive. I wonder if people reading this have any suggestions of websites/info that he could read to help him to "get it"? Maybe he wouldn't be open to it, but sometimes reading something "official", or the experience of another family and the changes they have had to make can make things seem more real? Unfortunately it can take people a while to shift their roles in a relationship/family, i hope he will at least pay a bit more attention and be more understanding soon. The stress of his lack of support/belief must be taking it's toll on top of the more practical matters. You have my sympathies.

  6. Thanks Ash - I think some information from another perspective (another carer) is a great idea.