Megan Schartner

by Megan Schartner

Introduction

When someone gets sick or injured, those around them tend to rally to support them. They send their well wishes, help out with food and household tasks that the person might be struggling with, and make an effort to check in on them. However, society also expects people to get better and recover from their illness or injury.

In fact, about half the population lives with an illness that is chronic, that is they will not get better quickly, and about 96% of those don’t have any visible signs of their illness. These people find that their quality of life can be impacted significantly by their conditions, and quite often they feel misunderstood by those around them.

There is a stigma surrounding many of these chronic illnesses. For example, mental illnesses are often misunderstood and discriminated against, and people suffering from chronic pain conditions are often told it’s all in their heads or that the pain can’t be as bad as they say it is. In fact, one in five people live with an invisible illness that causes chronic pain and fatigue.

Within the chronic illness community, people are working hard to remove the stigma surrounding invisible illnesses and to increase understanding and acceptance by others who don’t live with these conditions. There are many chronic illness advocates out there and each has found their own way to make a difference; we blog, publish books, create documentaries, and speak at events whenever we can.
Invisible Illness Awareness Week

Invisible Illness Awareness Week is an annual event started in 2002 by Lisa Copen, and is on from 26 September to 2 October this year.

Around the world, people use this week as a tool to raise awareness of the daily struggles and achievements of life with an invisible illness. Invisible Illness Awareness Week provides an opportunity to share our own stories with a wider audience through mainstream media and community groups.

Having read this article so far, you’re probably sitting there thinking this is all well and good but what has this got to do with me?

Well, given that one in five people live with chronic pain and one in two people live with a chronic illness, chances are that you know someone who does. You may not be aware of it, as many people don’t talk about their illnesses for fear that they might not be understood or because they just want to feel ‘normal’ for once, but there are people with invisible illnesses everywhere.

Person hiding in a lounge chair

These people find that their quality of life can be impacted significantly by their conditions, and quite often they feel misunderstood by those around them

Now that you know this, what can you do to help?

1. Don’t turn a blind eye or make assumptions about people.

It’s important to recognise that not all conditions are immediately visible, and some are not visible at all.

That young lady who parked in the disabled park, got out of her car and walked into the shopping centre? That’s me, and yes I need to use that spot. Just because I’m walking doesn’t mean I ’m not in pain or that I’ve actually got the energy to be there. Some days even a single step is agony or feels like I’m walking through mud. I have several chronic conditions, including Fibromyalgia and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome).

I look like a healthy woman in her 30’s, but on my worst days I can feel like an elderly woman in her 90’s. Let me tell you, I wouldn’t choose to use the disabled parking space unless I absolutely had to.

We may also turn down invitations to parties and outings. Being around a lot of people can be difficult for some, especially if they live with anxiety or depression. For others, like me, physical ability limits what activities we can do. Please don’t assume that we don’t like you or that we’re just being rude or antisocial. We all try our best and if we can make it, we do.

In saying that, we are still human beings with a need and desire to feel included and supported, so please do invite us out. Although we might turn down your invite ninety-five percent of the time, we appreciate the thought.

2. Acknowledge their illness and their struggle

A lot of the time, people with an invisible illness feel misunderstood and isolated. Simply acknowledging that you recognise what they’re going through can make a big difference in a person’s day.

Even if you don’t know if someone has an invisible illness, it’s possible to acknowledge it. You may notice someone that is struggling with a particular task or activity. For example, I have days where I have trouble focusing on conversations or I’ll walk into a room and forget what I was going to do there. Even if you didn’t know that I suffered from an invisible illness, it’s possible to empathise with me and acknowledge the struggle I’m going through without making me feel like I’m an idiot.

Instead of getting angry or frustrated at people when they drift in and out of a conversation, or ask multiple times how to do a simple task, take a moment to recognise that they’re struggling. A simple comment like “I see you’re struggling today” or a gentle touch on the shoulder followed by an “Are you OK?” can make a big difference in these situations.

If you do know about their illness, it’s possible to be more specific you’re your acknowledgement. When I have friends over, or I’m at their house, they often check in with me a few times to make sure that I’m not overdoing it. If we’re making plans they’ll tend to make them for during the day or early evening and we tend to meet up at people’s houses or at a quiet venue, so that I can participate without pushing myself too hard. Usually there’s a place I can go if I need to have a break and rest.

3. Take time to learn about their illness

If you do know someone with a particular illness, take the time to learn about it. There are many blogs online that you can read to find out more information about specific conditions and there are more and more books being published that can also help you understand.

Personally, I like to learn by reading personal accounts from individuals with similar conditions, or journal articles that look at the science behind the conditions, as well as children’s literature that is aimed at explaining conditions. I’ve included children’s literature because I often find that the simple language used is easier for anyone to understand.
When I first became ill with Fibromyalgia and Myalgic Encephalomyelitis, I struggled to understand what the illnesses meant for my life. At the time there weren’t any children’s books available that explained what it meant.

Over the last few years a few books have been published that help explain specific aspects of these conditions, including “Why Does Mommy Hurt?” by Elizabeth Christy, which includes tips for children about how they can support an ill parent, and “How Many Marbles Do YOU Have?” by Melinda Malott. These books focus on explaining a parent’s chronic illness to their children, but the concepts they are discussing can be applied to adults as well.

4. Help them separate themselves from their illness.

An individual with an invisible illness should not be defined by their illness.

If you’ve taken the time to learn about their illness, and found ways to acknowledge it and their suffering, you have already taken the first steps to ensuring that you’re not defining the individual by their illness. However, sometimes they need help to do this themselves.

One separation technique that I’ve found useful is to personify my symptoms and to use these characters when discussing why I can’t do particular activities at any specific time. Because my illness is mainly defined by chronic pain and fatigue, the characters I’ve created are Foggy Frog and the Pain Gang. Each member of the Gang is responsible for a particular type of pain. If you, or someone you know, also lives with a chronic pain condition, you may find the Gang a useful tool to help with separating the illness from the individual.

By incorporating mindfulness of, and discussions around, how their illness impacts their lives it’s possible for people to separate themselves from their illness and find a way to live a simple, sustainable and meaningful life despite their symptoms.

5. Check in on them

As I said right at the beginning, when an individual is sick or has an injury, friends and family tend to check in on them. Those with chronic illnesses tend to get ignored or forgotten over time because they learn to hide their symptoms and make an effort to do normal activities despite them.

Even if they’re homebound and you’re busy, you can check in on them by giving them a call or sending them a message every now and then just letting them know that you’re thinking of them. This simple act can really help minimise the impact of isolation on those of us with invisible illnesses.

6. Offer help

Ok I know I said five key ways in the article header but this one needed to be added as well!

Many of us with invisible illnesses struggle with feelings of guilt about the level of help we need, even with the simplest of tasks, and we may not feel confident enough to ask for help when we really do need it.

We all need to interact with others, and even if we don’t have the energy to do much, it’s nice to have the company. Offer to drop around for a cup of tea or coffee and just sit and talk, or watch a movie or TV show. If they’re struggling, make the drinks yourself and allow them to just sit back and rest while you’re there.

When you’re visiting a friend with an invisible illness, take a look around and see if there is any obvious areas that they’re struggling with. Maybe the dishes or the washing are piling up, maybe there’s no food in the cupboard. Just ask them if they need help or offer to do a particular task.

Conclusion

Over half of the world’s population lives with a chronic illness. These illnesses are often invisible to those around them. Invisible Illness Awareness Week provides us all with an opportunity to open our eyes to what is going on, and to become aware of how we can support those around us.

It reminds us that it’s important not to judge others based on their appearance and what we think they can do, because we never know what they’re dealing with underneath the external facade. We can help those around us by acknowledging their struggles, taking time to learn about their illnesses and help them to separate themselves from their conditions, and checking in with them and offering to help in whatever way we’re able to. Invisible illnesses create a daily struggle and sense of isolation. By working together, we can make a difference.

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Biography
Megan Schartner aims to live a simple, sustainable and meaningful life with chronic illness.
After being diagnosed with Fibromyalgia and Myalgic Encephalo-myelitis in 2013, Megan has dedicated her time to raising awareness of invisible illnesses and helping others to achieve a simple, sustainable and meaningful life.
She is the creator of the Foggy Frog and the Pain Gang Campaign, and launched the campaign with the associated picture book as part of Invisible Illness Awareness Week 2016.
You can find out more about her at Liveken.com or search for her on Twitter, Facebook or Instagram with @MegLiveKen.
You can purchase Megan’s book online “Foggy Frog and the Pain Gang” and help your friends and family understand the symptoms of your chronic illness
Links
www.invisibleillnessweek.com
www.liveken.com
Bibliography

Toni Bernhard, 2014, Psychology Today: The Extra Burdens Faced by Young People with Chronic illness, available: www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness, accessed 2016

Christine Miserandino, 2016, But You Don’t Look Sick: the Spoon Theory, available: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/, accessed 2016