Name Game

[Tammy7]

I'm still surprised........maybe I shouldn't be...........about how many people still havn't even heard of CFS/ME. I would estimate that roughly 75% of the people that I tell about CFS........have never ever heard of it.

 

[Cort]

Right or wrong, I hide behind “dysautonomia" or “neurologic disease”. People seem to respect those, and I’m simply not up to the challenge of converting people to belief in ME/CFS. I tried that, and it always ended in frustration and exhaustion.

I’ve learned (the hard way) that the more I try to explain, the more insecure I sound and the more I’m met with disbelief. Like @Lissa, I’ve learned to “cut short” my explanations. Although this approach feels rude at times, I have to remember that I don’t owe anyone an explanation just because they ask a question.

While hiding makes me feel a little guilty, I remind myself that a real name has not yet been agreed upon. When it is, I may have to reevaluate. For now, I can’t really get behind SEID - seems a temporary label slapped on us until more answers are found, and I’m starting to think answers are coming soon.

It may all end up being some form of dysautonomia!
You may just be ahead of us...

 

[Cort]

Thanks for the nice comment! I was a little tentative about posting that, as I feel like a giant chicken and am not advocating for us. Perhaps if I was more than housebound/bed bound, I’d have the energy to do so. But for now, I have to reserve energy every way I can - and that includes not getting into debates with the few people I do see when I’m out.

I’m holding out for a miracle, even though some days that seems awfully far away.

I agree - don't waste your energy on something that's not going to make a difference anyway. Now if you were talking to the President or Francis Collins I would very strongly suggest you say ME/CFS! Absent them - I say do what works for you. The best thing you can do is take care of yourself...

 

[Julie G]

Thanks for the nice comment! I was a little tentative about posting that, as I feel like a giant chicken and am not advocating for us. Perhaps if I was more than housebound/bed bound, I’d have the energy to do so. But for now, I have to reserve energy every way I can - and that includes not getting into debates with the few people I do see when I’m out.

I’m holding out for a miracle, even though some days that seems awfully far away.

At least we have the internet and forums, so when we're house/bed bound we don't feel completely isolated. We have some important connections with other patients & understand each others difficulties while research is being done. This gives us a purpose and feeling of accomplishment in conditions not conducive to traditional accomplishments!