In Part 1 of my Letter To The General Public From Those With CFS / ME / FM, I addressed a lot of the issues that our loved ones, family, friends and acquaintances may like to know about our experience of living with these illnesses.
Here, in Part 2, I give some practical tips to non-CFS / ME / FM people on how they can go about starting to support us in our journey through illness (and hopefully back to health!)
For partners or close relatives/friends of those with CFS/ME/FM, I’d also recommend reading Day 22 of this series: Letter To Partners of People With CFS / ME / FM.
That post addresses a lot of the helplessness and powerlessness our loved ones feel when dealing with people in their lives who have this illnesses (or conglomerate of illnesses).
How You Can Support People You Know Who Have CFS / ME / FM
1. Believe us
If we say we’re in pain, believe us. If we say we’re exhausted even if we’re still smiling and laughing, believe us. If we say we feel ill, believe us.
Just believe us because you love us, trust us, and know that we are not liars.
And if you don’t really know us that well, still believe us.
If we have been diagnosed by a medical professional as having CFS / ME / FM, if you find it hard to believe our word, please believe their expertise.
Think of any invisible illness such as CFS / ME / FM like you do about air and love – you know they’re real even though you can’t see them.
And just like love, it’s very hard to explain or describe, but you know it’s definitely there. CFS / ME / FM is definitely there too – it’s just WAY less pleasant than love! 🙂
2. Find out more
Firstly, ask us to describe to you how we feel. And truly listen with empathy. We’re not whingeing or whining.
We just desperately want someone to get how we’re feeling (see #4 on this list for some helpful hints on the difference between empathy and sympathy).
Secondly, do some research online.
Read a few really good resources like those on this page or this page, and blog posts such as The Spoon Theory (which give you an idea of what it’s like to live with chronic illness day-to-day), and this great blog post written as a letter to the newly diagnosed. (There are thousands of great blog posts, so just Google them if you get stuck!)
My post on Day 22 of this series – Letter To Partners of Those With CFS / ME / FM is worth a read as well (if I do say so myself 😉
3. Don’t treat us as lesser people
Just because we have an illness doesn’t mean we are different people.
It may seem like that at times, but on the inside, we’re pretty much the same human being we were when we were healthy, with the same personality, hopes, dreams and plans for the future … we’re just a little hampered in expressing these physically at the moment.
When we have the energy, we still enjoy spirited conversation, and we definitely still like to know about your lives and what’s going on in the world.
It sometimes pains us a little to hear of others enjoying their lives in full health, but mostly we have learned to live vicariously through others, so don’t hold back telling us your good news because you think it’ll hurt us.
We care about you and want you to be happy.
And despite our illness, we are still whole human beings. We like to be treated with dignity and respect, just as every other non-ill person does.
In short, in most ways, it’s okay to just treat us like you did before.
We can’t always DO what we did before, which is something that we realise is a little hard for you to adjust to. Believe me, we’re finding it even harder to adjust to it!
We know it can be hard for you to try to find conversation topics with us when we often spend a lot of time in bed or at home.
If you know us well enough, just acknowledge that fact, and between us we can probably work out some topics that we can both still talk about (ie our continued common interests!).
Take it one step at a time. And remember that communication is the key. If you’re confused, lost for words, wondering what to say next, just acknowledge that.
You’ll be surprised how well we take it (and if we don’t, just know that we’re probably just really sad that our lives have changed so much that even conversation topics are hard to find! It’s all just part of our grieving process. We know you’re also grieving, and that’s okay too!)
4. Don’t treat us as victims
As much as we want you to understand what we are going through and believe that we are ill, we don’t want you to feel sorry for us or treat us as victims.
We want your empathy, not your sympathy.
In the words of the amazing Dr Brene Brown, “Empathy fuels connection. Sympathy drives disconnection”.
For a great summary of the difference between empathy and sympathy watch this short animation, with Brene Brown speaking in the background.
“Empathy and sympathy are not just two different approaches to confronting the emotional challenges of other; they are diametrically opposite responses in many important ways. Sympathy places another person’s problems at a distance from us, places us in a position of superiority, and drives separation, say the film’s narrator Dr Brene Brown. Empathy on the other hand requires that one internalize the feelings of another. That shared experience drives interpersonal connection” – Dr Brene Brown, via http://www.karmatube.org/videos.php?id=4646
Brene’s definition of connection gives you even more of an idea of what we people with CFS / ME / FM need from you:
“Connection is the energy that is created between people when they feel seen, heard, and valued; when they can give and receive without judgment” – The Power of Vulnerability: Teachings on Authenticity, Connection, and Courage (Audible recorded seminar or on Amazon on CD – I recommend it to everyone on this earth to listen to!)
We don’t want to hear “Oh, you poor thing!”.
We want to hear “I can only imagine how tough it is for you” or “I really get how tough it is when you’re going through something others don’t understand. Tell me more about how it is for you”.
And we want you to get that, although we are suffering, we are not sufferers, and we are not victims.
We are victims of an illness, but we, ourselves, don’t want to be treated as “weaklings”.
Ditto, we don’t want to be treated as an illness. We have an illness, but we’re still people with our own individual personality. CFS / ME / FM is only part of our story. Dig a little deeper and you’ll find there’s lots more to our story.
5. Live YOUR lives fully
The best favour you can do us, in many ways, is to just make the most of your life, with your healthy, able bodies.
Treat your bodies like temples. Appreciate your health.
Don’t abuse the amazing gift of health that you have been blessed with. Don’t fill it with poisonous substances like nicotine, drugs, alcohol or mistreat it in ways that will very likely see you end up ill yourselves.
One of the ironies of life is that we only appreciate our health when we have lost it.
If you are healthy, or have a few minor ailments that could be easily treated or just cured by living a healthier lifestyle, then make the most of what you have.
Use your healthy bodies and minds to fully live your lives, your passions and your purpose. And if you don’t know what those passions and purpose are, find out! (Here’s a podcast that might help with that)
You don’t know what you’ve got till it’s gone! As much as we want you to understand our illness, we don’t want you to ever experience it!
Thank You
If you’ve read this far, and you even took the time to read Part 1 of this 2-part post, THANK YOU!
From the bottom of my and every CFS / ME / FM person’s heart, we appreciate it, because it means that you really care about us (or you really care about someone in our community).
That means so much. And if you found this and the previous post valuable, please share it with others so that we can grow the awareness of this highly misunderstood health condition.
And to those reading this who are living with CFS / ME / FM or another Spoonie illness, I hope you also found it valuable and feel that you could share it with your family, friends and others. Click the share buttons below to share it easily on social media.
Until next time my friends
Keep Smiling
Louise
Related Posts
Day 1: 31 Days To A Better CFS Life – 3 Myths of Acceptance That Hold Us Back
Day 2: 31 Days To A Better CFS Life – It Is As It Is. Choose It!
Day 3: 31 Days To A Better CFS Life – 5 Ways To Control Our Thoughts When In Overwhelm & Despair
Day 4: 31 Days To A Better CFS Life – 6 Things You Can ALWAYS Do Despite CFS / ME
Day 5: 31 Days To A Better CFS Life – 7 Ways To Focus Your Thoughts On Something Uplifting
Day 6: 31 Day To A Better CFS Life – Being Present – 7 Simple Mindfulness Techniques To Help Manage CFS
Day 7: 31 Days To A Better CFS Life – Learning To Ask For Help – 5 Simple Tasks You Can ‘Outsource’ To Help Manage CFS
Day 8: 31 Days To A Better CFS Life – Discover Podcasts – 5 Steps To Finding & Listening To Good Podcasts
Day 9: 31 Days To A Better CFS Life – Listen To Your Body. I Am Today!
Day 10: 31 Days To A Better CFS Life – 10 Ways To Nurture Yourself & Fill Your Bucket
Day 11: 31 Day To A Better CFS Life – 5 Ways To Combat Spoonie Mother Guilt on Mother’s Day!
Day 12: 31 Days To A Better CFS Life – My 5 Fave Ways To Connect With The Online CFS / ME Community
Day 13: 31 Days To A Better CFS Life – How & Why Audiobooks Are A Great Illness-Management Tool
Day 14: 31 Days To A Better CFS Life -10 Top Audiobooks I Recommend
Day 15: 31 Days To A Better CFS Life: 5 Tips For Getting Tasks Done When You Have CFS / ME
Day 16: 31 Days To A Better CFS Life – What Are You Struggling With Most Right Now?
Day 17: 31 Days To A Better CFS Life: What Are You Doing WELL In Managing CFS / ME / Fibro? What Are You NOT Struggling With?
Day 18: 31 Days To A Better CFS Life – 3 Things I Struggle With At The Moment & How I Manage Them
Day 19: 31 Days To A Better CFS Life – 101 Ways I Manage CFS / ME & Electrosensitivity Pain
Day 20: 31 Days To A Better CFS Life – 5 Benefits Of Writing To Help Manage CFS / ME
Day 21: 31 Days To A Better CFS Life – Gratitude is Healing – 5 Ways To Practise Gratitude
Day 22: 31 Days To A Better CFS Life – A Letter To Partners Of People With CFS / ME
Day 23: 31 Days To A Better CFS Life – 7 Healthy, Safe Ways To Release Emotions
Day 24: 31 Days To A Better CFS Life – Letter To The General Public From Those With CFS / ME / FM – Part 1