Living With An Invisible Illness

It’s Invisible Illness Awareness Week. A Chronic Voice’s monthly LinkUp prompts provided me with inspiration for this post to help raise awareness on what living with a chronic invisible illness is like, including 4 empowering reminders for anyone living with an invisible illness too.

What is an invisible illness? – Gazing beyond a healthy exterior

Invisible illnesses are medical conditions where people typically look healthy on the outside. Examples of invisible illnesses include:-

• Chronic fatigue
• Dysautonomia
• Postural Orthostatic Tachycardia Syndrome
• Fibromyalgia
• Chronic pain
• Migraines

The symptoms people experience don’t have any visible signs that are obvious to others:-

• You can’t see the feeling of weights being attached to limbs to highlight how heavy they feel,
• You can’t see bruises and scars from the aching muscles and joints,
• You can’t see the world swirling and being out of focus from blurred vision and dizziness,
• You can’t see lightening bolts or electric shocks strike our skin to demonstrate the sharp stabbing shooting pains,
• You can’t see the fear and anxiety that stepping outside your front door can produce after losing confidence in your body.

Related Post: What Is Dysautonomia & POTS? Facts, Symptoms, Diagnosis & Treatment

Gazing behind the scenes of living with an invisible illness

People typically only see us on our good days. What is also invisible to others are what goes on behind the scenes on bad days. The times when symptoms worsen and leave us bed bound or housebound, where the signs of invisible illness are more obvious.

• When sitting and standing from bed is a struggle,
• Having to lay down with my feet up in the air to recover after showering,
• Clinging onto the banister when the dizziness and blurred vision becomes too much.

If concentrating, maybe there are visible signs 

However, if you concentrate hard enough, even on good days, there may be subtle signs that I and others with invisible illnesses are struggling:-

• Constant fidgeting and tensing of muscles when standing to help blood flow back up my body,
• Always carrying a water bottle and regularly taking sips to ease my dizziness,
• Larger bags under my eyes as a result of sleep disturbance,
• Strained smiles in some photos where the pain is hard to bear,
• Taking longer to eat meals to help minimise nausea, digestive problems and discomfort, 
• Having to use electrical equipment to chop and prepare food as the pain or weakness in my limbs makes chopping things by hand difficult.

Maybe if you concentrate hard enough invisible illnesses aren’t so invisible after all.

living with an invisible illness can feel Defeating

I was naive thinking everyone would stick by me and support me throughout my health journey. People tend to be understanding for a few weeks but the concept that invisible chronic illnesses are things people suffering with have to manage forever doesn’t sit well with people.

As time passes, frustration grows that I haven’t fully recovered or my health isn’t improving as quick as they’d like it too. The messages dry up, I lose touch with people and I watch my circle of friends become smaller and smaller. As it feels like my life is on hold it’s easy to feel left behind as everyone else moves on with their lives and the world continues as normal around me:-

• The church services I used to attend still take place,
• The tennis and netball matches I used to play still go ahead,
• The restaurants I used to eat out at still serve meals to others.

It’s easy to feel forgotten about and wonder if people still remember my existence. Living with an invisible illness means I often feel invisible too.

Related Post: How Chronic Illness Has Changed My Perspective On Life

Shaming comments that come with living with an invisible illness

• How much longer until you’re better?
• But you don’t look sick,
• You’re too young to be ill,
• You were fine a couple of hours ago,
• Just think more positive,
• My friend took this supplement and she’s fine now.

Living with an invisible illness and having a healthy exterior often leads to people being doubted and dismissed by medical professionals, family and friends. There’s so much information on how to cope with the physical symptoms. What I wasn’t prepared for is the criticism, judgement and stigma, which is attached to having a chronic invisible illness, which at times I struggle with more than the physical symptoms themselves:-

• Going from being viewed as someone who was hard working, respected and successful to inferior, a burden and lazy.
• The lack of understanding and knowledge from medical doctors, being dismissed and told all the symptoms are in my head and just due to anxiety and stress.
• Having to fight to be heard, fight to be believed and fight for every referral.

Empowering reminders for those living with an invisible illness

Living with an invisible illness is hard. Being blamed and made to feel guilty for it is harder. Here are some reminders for anyone needing them.

1). You are so much more than your illness

Having been told that I’m letting my illness define me, that it’s all I am and ever will be if my health doesn’t improve more, this is something I’ve been reminding myself of.

Yes, my health dictates a lot of what I am able to do everyday and having a chronic illness has shaped me more than any other experience in my life. However, it hasn’t taken away everything about me and it doesn’t define me. I am so much more than just my illness.

• It may stop me from playing sport but I still enjoy other forms of exercise like walking, yoga and stretching.
• It may stop me from working but I still have a passion for health and fitness.
• It may stop me from eating certain foods but it doesn’t stop me baking and cooking with new foods to enjoy.
• It may stop me from attending social events but I’m still a daughter, niece, cousin and friend.
• It may stop me from going to church some weeks but I am still a child of God and can listen to sermons online.

To anyone needing a reminder, you are so much more than your illness or any other label people may give you. You are loved, worthy and important exactly as you are and your life has value, meaning and purpose.

2). Be proud of the progress you make that no one else sees 

Living with an invisible illness means not only are symptoms invisible but the progress we make is too. In the same way symptoms like dizziness, nausea and headaches being invisible doesn’t make them less valid, progress in them that no one else can see doesn’t make them less valid either.

Also, typically people often only see us on better days. However, the times we’re fighting the hardest and showing the greatest amount of strength is behind the scenes when no one is watching… 

• The days getting out of bed is a struggle. 
• When tasks like showering and cooking a meal use all our energy. 

Progress doesn’t have to be visible, recognised and acknowledged by others to count and be valid. Progress is progress and achievements are achievements, no matter how big or small or whether visible or invisible to others. It’s so easy to focus on what we can’t do, so take the time at the end of each day to acknowledge and be proud of all your small wins, progress and achievements. 

3). You are worthy of love, help & acceptance and they should never have an expiry date or terms and conditions 

It’s so easy for us to feel inadequate, inferior, a burden and of less value. The way others treat us and lose touch with us can often heighten these feelings. However, you are worthy of love, help, respect and acceptance every single day… 

• On bad days
• Good days
• Days when you’re bedbound
• Days when you can leave the house
• Days when you’re not able to do anything
• Days when you can function fully
• Days when symptoms are flaring 
• Days when you’re making good progress

It’s not reliant on:-

• Your health continually improving
• On you overcoming something
• On you being able to do more
• On you doing something in return
• On you being able to get to church
• On you being able to return to work

Love, help, respect and acceptance should never have any terms and conditions or an expiry date.

4). You are fearfully and wonderfully made – Psalm 139:14 

Living in a world and scrolling through social media seeing other people doing the things we’d love to means it’s so easy to feel inferior and to grow frustrated at our bodies not working like our “healthy” family and friends around us. Being labelled a burden, lazy and worthless can heighten these feelings. However, it’s so important to remember that God loves us exactly the way we are and we’ll never be inferior in His eyes.

• We’re not unreliable – our health is.
• We’re not a burden – we live with one, which takes a tremendous amount of strength and courage to deal with each day.
• We’re not lazy – taking care of our health is a full time job.
• We’re not inferior – we are still valuable, capable and knowledgable and have the ability to achieve things and impact others regardless of our circumstances and the opinion of others.

invisible illness management blog posts

Click to read my other blog posts with tips, treatments and strategies that help me manage my symptoms:-

• Managing Symptoms – 6 Things To Do In Bed
• 10 Free Ways To Improve Your Health
• Morning Routine – 7 Steps That Ease My Symptoms In The Morning
• 9 Tips To Stay Hydrated with POTS/Dysautonomia
• Anxiety & Stress Relief – 15 Things To Do In Bed
• The Elimination Diet That Eased My Symptoms
• 12 Vagus Nerve Exercises To Improve Physical & Mental Health
• 6 Free Ways To Start A Toxin Free Lifestyle (& Why It’s Important To Ease Symptoms)
• 6 Detox Pathways To Support To Remove Toxins & Help Ease Symptoms
• Detox Your Home – 15 Easy Ways (& How It Can Help Ease Symptoms)
• 10 Tips To Stay Cool & Ease Symptoms In The Summer Heat

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Does anyone else live with an invisible illness or know someone that does? What is your experience? Leave me a message below or follow me on Instagram, Facebook, Twitter, Pinterest & Youtube.