It used to happen more often. A well-meaning family member or friend would mention something about a cure “one day” and about me staying hopeful. Over time, those comments gradually ceased. I made it clear I didn’t want to hear it and they probably began to accept that it was unlikely.
Last week, though, a well-meaning relative made one of those comments. I was caught off guard, since I hadn’t heard it in so long. I tried to explain there won’t be a cure. In fact, no one is even researching a cure right now! And even if they were, and even if they were on the right track, it would be a long time before that cure was commercially available. Hell, few of my conditions are even being researched for potential treatments, never mind cures! But he kept trying to say it could happen, I couldn’t be sure, it was possible, etc.
Now here’s the thing about hoping for a cure: it makes the other person feel better. They can see how poorly I’m doing at a given time, and think that one day down the road I’ll be better, and it comforts them. I get that. And if they want to believe it, they can go ahead. What I don’t want is for them to discuss it with me. If I believed there was a cure coming then yes, I might be comforted, but I don’t.
My pain started when I was a kid. For many years my family, friends, and doctors told me that it would be ok, that I would get better, that the pain would go away. It didn’t. It’s been more than 2 decades and the pain is even more prevalent now than it was then, plus I have even more symptoms. “It will be ok” became a lie to my ears. I couldn’t believe it any more. I still don’t.
So talking about a cure isn’t helpful for me. Yes, I admit there might be a cure in 20, 30, or 40 years. But in the near future, no, there won’t be a cure. I’ve come to terms with that. I’m ok with it. Well, sure, I’m not thrilled. Yes, I want to feel better and travel and ride a bike, and pick up my nieces and nephews and do all those other joys in life that I can’t do any more. But I have accepted my reality. Now I just need everyone else to accept it. Or to at least not talk about cures when I’m around.
Unfortunately, as you know, people simply don’t know how to react to a situation like yours, and they don’t know what to say, so they say whatever they think will be comforting and uplifting. I’m sure they mean well.
I agree CM that they probably mean well. That’s why I’m patient with the first comment. But when I explain why it’s not true, it’s frustrating to have them argue the point.
Sorry I haven’t commented lately. My Mum passed away aged 87. She died peacefully in her sleep. I’ve been rather numb.
I think people do believe that saying there might be a cure etc is helpful. I believe it helps them not focus on how serious the situation is they aren’t sure how to deal with it. Too much sympathy can be just as bad. It’s our life we have to make the most of it and take pleasure in the small things others forget.
Oh Lorna, I’m so sorry to hear about your mom. I can’t imagine what a loss that must be.
You’re definitely right about taking pleasure in the small things! And in that vein, I hope you can find some comfort during this difficult time with the memories of the seemingly small moments that had a lot of meaning. I wish you the best.