I love that friends, family and even neighbours often think of me and ask how I am, or say they hope I am feeling better.
It lets me know that I am cared for and not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years.
An Unexpected Emotional Response
However, it also conjures an unexpected emotional response in me. A response that I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt.
I’ve been contemplating that question for a while and 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 feel sadness, fear or even anger. In some people the response is to withdraw or run from the situation.
How Are You? Any Better?
The chronic disease sufferer, who is so often weighed down by their pain and disease symptoms, can find it hard to decipher why friends and family respond in certain ways to their illness.
Those around us, searching for an emotional, appropriate response to our disease and circumstances, have little choice but to ask, ” How are you today?” or to say, “I hope you’re feeling better”.
So Why The Guilt?
I think the guilt felt by the chronic disease sufferer, is rooted in the fact it’s unlikely we are feeling any better than they did yesterday, or the day before.
It’s likely we’ll be on a path of getting progressively worse.
No one wants to hear that and 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 and honesty so, if I did lie, I would still feel overwhelming guilt.
Finding A Place of Understanding
So how do we, the chronic disease sufferer and the caring friend or family member, live happily ever after with a situation that is ongoing and 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”
” 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. That usually helps get a conversation flowing that makes everyone comfortable.
PS: In the spirit of guilt free openess and honesty… I’m not doing all that great physically today but I’m feeling relaxed and hopeful tomorrow will be a little better
If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women