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 I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt.
Why?
I’ve been contemplating this 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 a bright introduction, a middle with a dramatic climax and a conclusion with a happy ending.
It’s like that in real life too. We love to hear good news stories. People overcoming diversity, beating cancer, climbing mountains or achieving personal goals against all odds….these are the stories that increase TV ratings or go viral on social media.
Life Isn’t All Champagne And Roses
If we hear someone is sick we like to hear soon after 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.
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, cease asking how we are and may simply 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 they are feeling any better than they did yesterday, or the day before.
It’s likely they’ll be on a path of getting progressively worse.
We know no one wants to hear this and we certainly don’t want to say it. It all sounds a little too dismal!
Before long you’re feeling like you are letting others down by not improving. You may even question if on some level this is all your fault.
I don’t like giving bad news, so a mental debate with myself starts when I have to. Do I tell the truth (or a dulled down version) or change the subject altogether?
I’ve always been such a strong advocate of openness and honesty, I usually end up telling my reality in the most positive light possible. I still desperately want to sprinkle it with champagne and roses to help it seem more digestible to the listener.
Its just not that kind of story though and while I do embrace the positive aspects of my life, sometimes we need to tell our stories to someone who we trust and who we know will cope emotionally with the facts.
The one who has knowledge uses words with restraint, and whoever has understanding is even-tempered.
Proverbs 17:27
Finding A Place of Understanding
So how do we all, 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 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 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 all the gory details.
At the end of the day contact with others is so important for our overall wellbeing.
Awkward responses, emotional reactions, misunderstandings…..they are going to happen. Chronic Illness is hard, for everyone.
Try to keep the lines of communication open with those in your life who truly matter.
Who knows, if we sit down and talk, cry, laugh, repeat….we might even find moments when champagne and roses can be a part of our story afterall!
Take care
Sam xx
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.
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My Medical Musings 
Another one that is so relevant. Thanks Sam 💜
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As you know I value laughter almost more than any other coping mechanism. In fact laughter is the one thing that helps me be human. When people ask me how I am doing, I try to tell them a little joke more often than not. If they fail to laugh, that is when I know it is way past time to sharpen my wit, or get to the ER. Because something is clearly wrong.
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Laughter always helps me too…..even in the ER!!
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Thanks Sam for yet another good article. I have also found peace in being open and honest about it. Never want to hide it from people. Even in my workplace, have told colleagues and acquaintances in a very matter of fact way (and not for wanting sympathy), that I have this condition and that I can’t do x y z. It has helped them so much too because they aren’t awkward around me & know exactly what activities I can be a part of and what I can’t.
On Wed, Nov 20, 2019 at 3:59 PM My Medical Musings wrote:
> Sam posted: “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 reclus” >
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Another spot on post, and I think you make some really good points, especially on how chronic illness is hard on everyone and that it’s important to keep the lines of communication open. Others may never quite ‘get it’, because I don’t think you can truly understand and appreciate chronic illness unless you’ve experienced it (and even that is different for everyone) but with sharing, helping others to understand, I think you’re right, there can be times of champagne and roses in those moments ♥
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Thanks Caz 🧡🧡
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Sam, you’ve done a great job of articulating such a complex subject. I believe you’ve arrived at the crux of the problem and knowing what it is goes a long way to helping us have more compassion for those who simply don’t know how to deal with the severity and longevity of our illness and maybe work through it. Xx
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Thanks so much Michelle. It’s certainly a tricky subject to tackle xx
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It annoys me that my best friend of over 40 years literally turned her back on me when she realised the need to change what I eat, lose weight, exercise more, the more you use that wheelchair the more you will rely on it, any way you know the score, then why is her facebook always full of what she is doing for the homeless, what she is doing for the elderly, yet she can’t support the ones that are closer to home.
It has passed me now because yes she did make me feel so guilty but I now realise that is about her not me.
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