I love that friends & family & even neighbours often think of me & ask how I am or say they hope I am feeling better. It lets me know that I am cared for & not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years.
However, it also conjures another emotional response. A response that I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt & even frustration.
I’ve been contemplating that question for a while & I’ve come to the conclusion it’s because I feel like I’m letting everyone down. People generally like to read a good story with an introduction, a middle with a climax that is often dramatic but has a conclusion with a happy ending.
It’s like that in real life too. If we hear someone is sick we like to hear soon after that they’re better. If we hear someone has a terminal illness or chronic disease that will progress rather than improve……well, what do you do with that? How do you find the right emotional response to the person living with those circumstances? The natural response is to run or feel anger or fear or deep sorrow.
Flight or fight!!
The chronic disease sufferer has no choice but to fight as flight is a little impossible for most of us! So those around us, searching for an emotional, appropriate response to the situation have little choice but to ask, ” How are you today? ” or to say, “I hope you’re feeling better”.
So, the guilt & frustration of the chronic disease sufferer is rooted in the fact it’s unlikely they’re feeling any better than they did yesterday, or the day before & it’s likely they’ll be on a path of getting progressively worse.
No one wants to hear that & no one wants to say that. It all sounds a little…well, too dismal! 😕I don’t like giving dismal news so I start to feel bad that I have to. It’s either tell the truth (or a dulled down version) or lie. I’ve always been such a strong advocate of openness & honesty so, if I did lie, I would still feel overwhelming guilt.
So how do we, the chronic disease sufferer & the caring friend or family member, live happily ever after with a situation that is ongoing & let’s face it, burdensome to everyone.
We just need to keep trying to understand each other. The chronic disease sufferer needs to understand that people really can’t find the right thing to say because what can you say? The caring friend or family member also need to understand that your response may simply be, ” thanks for asking, still no change” or ” things are getting a little worse”. Depending on who you are talking to, you may feel comfortable to expand with a few details.
At the end of the day contact with others is so important for our overall wellbeing. So, my tip is, once that awkward “hope you’re feeling better today” moment is out of the way, simply ask the caring enquirer how they are & get a conversation flowing that makes everyone comfortable.
PS: In the spirit of guilt free openess & honesty… I’m not doing all that great physically today but I’m still managing to feel relaxed & happy
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum ” Medical Musings with Friends”. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.