Tips for ME blog: Attacked by Hope

[Andy]

Reflecting, in part, on the impact of the news of the Rituximab null result.

"I caught a glimpse of Hope standing naked. I was alarmed by the strength of my desire. It was tempting fate and awoke irrational superstition in me. I didn’t dare believe that Hope would reciprocate the strength of commitment I felt. Although I love to spend time around Hope, experience of her mercurial ways has taught me well. She has again withdrawn her attention, after an unexpected argument, and I am left reeling."

Anyone living with chronic illness has a complex relationship with Hope. Over the last couple of weeks mine has been so tumultuous that we could be beyond speaking terms soon.

Faith
Do you share my experience of having both logical and irrational beliefs about claiming improvement too quickly? Both styles of thinking make hope tricky to deal with.

It is hard to accurately chart cause and effect. Mostly what we notice is correlation which can be irrelevant. There are also so many complex factors, how do we know what’s what? I find I’ve become superstitious about claiming improvement. This isn’t about fear of looking foolish, it’s actually believing it tempts fate. I know it is irrational, and I don’t want to be irrational, but it’s still there.

https://tipsforme.wordpress.com/2017/11/24/attacked-by-hope/

 

[Liv aka Mrs Sowester]

Hope is cruel, I think Jenny is incredibly brave to allow herself to hope.

I've grown so tired of the pain of disappointment that I'm terrified of hope. I work hard to make the most of every day, to make this a life worth living, because this might be it for me. I know if a treatment comes along it'll be incredibly difficult emotionally for me to try it just in case if doesn't work.

Hats off to you Jenny, you're made of strong stuff!

 

[Dechi]

This has killed any hopes I had as well. From now on I will concentrate on trying to accept this illness and make the most I can out of life.

When, and if there are any real developments in research towards treatment, I’ll be ready for it but not longing for it anymore if I can help it. I believe this is destroying me and keeping me from moving forward with this « new and not improved » life.

 

[Indigophoton]

If secondary benefits are a thing at all, I have been shortchanged.

*laughing in recognition* Well said, @Jenny TipsforME

 

[Jenny TipsforME]

Hope is cruel, I think Jenny is incredibly brave to allow herself to hope

I sort of see it the other way around. I think people who don’t have hope in recovery/remission and just keep going are stronger. I’m naturally inclined towards hope, and crumble without it. Personal experience is important too. I know I have got to almost-well before and I’ve known several other pwme offline return to normal levels of activity. This makes improvement seem plausible to me (although I don’t expect permanent recovery without a scientific breakthrough).

My predictive text wanted me to write scientific breakdown, which might be more suitable this week

I believe this is destroying me and keeping me from moving forward

Self awareness is important. Some people do manage better by just assuming their health will stay the same. Presumably the people who do better ignoring the twists and turns of research, will still get to hear when there is finally a breakthrough after all the scientific breakdowns...

Perhaps there should be a mailing list for people who don’t want to know anything at all until a successful stage 3 trial has been completed and replicated

 

[ladycatlover]

My predictive text wanted me to write scientific breakdown

Thank you for a much needed laugh!

 

[Jan]

I had hope since stage II Rituximab trial, it was a tiny light at the end of a very dark tunnel. It has now gone out.

 

[Sunshine3]

If this is any boost to anyone, Ian Lipkin said that he anticipated that there would be treatments found for some ME patients in less than 8 years..I emailed him, as I am eager!!* Also, Ron Davis anticipates that they will find something much sooner than 10 years. Now, in my mind, it depends on what that something is...If its an existing fda approved drug, it will speed things up. If not, it could be a long slow road. The thing that always boosts my hope is Ron Davis wants to save his son, the love a parent has for their child is like no other. He is giving it his all. Plus I'm sure he is conscious of his own age....time has to be a constant pressure on him.