5 Things I Wish I Knew About Invisible Illness
Pre-Chronic Illness, I used to look at people with chronic illness and feel a deep sense of admiration. I thought they were brave in a way I could never be. Strong in a way I did not possess. I would say things like there is no way I could ever survive being chronically ill. I hate taking paracetamol. Imagine needing pain medication every single day. I would fall apart.
I am not good with pain. I have always been dramatic about it. I hyperventilate when having blood tests. I get clammy. I look away. I count ceiling tiles. I apologise to the nurse for being a problem before they even touch me. Pain and I have never been friends.
So when my worst wishes quietly turned into my reality, I was not ready. Not physically. Not emotionally. Not mentally. I did not rise gracefully into strength. I stumbled. I resisted. I became someone I barely recognised for a while.
It took years of feeling out of sorts. Of being angry at my body. Of hating everyone and everything (a bit of an exaggeration and definitely not hubby or kids). Of grieving a life I had not even realised I was attached to. And then somewhere along the way, without a big moment or dramatic breakthrough, I arrived at acceptance. Not perfect acceptance. Just enough to keep going. Just enough to live day by day.
Here are five things I wish I had known earlier about invisible illness. Not to scare my younger self. But to soften the blow.
1. You do not become strong overnight
I used to think people with chronic illness were just built differently. That they woke up one day with an inner strength gene switched on. That they had a level of resilience I simply did not have access to.
What I know now is that strength is not a personality trait. It is a muscle you build because you have no choice.
I did not feel strong in the beginning. I felt weak. I felt defeated. I felt like I was constantly failing at something everyone else seemed to manage effortlessly. I cried more than I would like to admit. I cancelled plans. I slept too much or not at all. I felt embarrassed by how much I struggled.
Strength came later. Quietly. Through repetition. Through getting up again after a bad day, because the day does not stop just because you are tired. Through learning how to advocate for myself, even when my voice shook. Through surviving things I once said I could never handle.
You do not wake up strong. You earn it slowly. And often you do not notice it until you look back and realise you are still here.
2. Acceptance does not mean liking it
I thought acceptance meant being positive all the time. Being grateful. Making peace with everything. Smiling through it. Turning pain into inspiration.
That is not what acceptance looks like for me.
Acceptance is knowing this is my reality and choosing to live anyway. It is taking my medication even when I resent needing it. It is pacing myself without feeling guilty. It is understanding my limits without letting them define my worth.
Some days, I accept my illness. Some days I tolerate it. Some days I hate it. All of those days count.
You can accept something and still mourn it. You can move forward and still wish things were different. Acceptance is not a finish line. It is a practice. One you return to again and again.
3. People will not always understand, and that will hurt more than the illness sometimes
Because invisible illness has no obvious markers, people forget. Or they doubt. Or they minimise. You look fine becomes both a compliment and a curse.
People will tell you to push through. To try harder. To think positively. To just rest more.
And sometimes they will disappear. Not out of cruelty but out of discomfort. Your illness does not fit neatly into their lives, and they do not know what to do with that.
This part broke my heart more than I expected. I was not prepared for how lonely it could feel to be unwell in a way no one can see. You can read my blog post on why I abandoned the search for new friends.
What I wish I had known is that their misunderstanding is not a reflection of my reality. I am allowed to protect my energy. I am allowed to step back. I am allowed to build a smaller, safer world around myself.
4. Your body is not betraying you
For a long time, I felt like my body had turned against me. Like it had failed at the one thing it was supposed to do. I spoke to myself harshly. I felt disconnected from my own skin.
It took time to realise my body was not the enemy. It was doing its best with what it had. Communicating in the only way it knew how.
Pain is information. Fatigue is information. Symptoms are not punishments. They are signals.
Learning to listen instead of fighting changes everything. It did not make the illness go away, but it softened the relationship I have with myself. And that matters more than I ever realised.
5. You are stronger than the version of you who said I could never do this
I find myself thinking about the person I used to be. The one who hated taking paracetamol. The one who was terrified of needles. The one who said there is no way I could manage a chronic illness.
I wish I could sit beside her and tell her this. You will fall apart. And then you will put yourself back together in ways you cannot imagine yet.
You will learn how to live day-by-day. You will learn how to rest without guilt. You will learn how to find joy in smaller moments. You will learn how to be gentle with yourself.
You will still be scared sometimes. You will still have days where it feels unfair. But you will also discover a depth of strength you never knew you had.
Invisible illness took a lot from me. But it also showed me who I am when things are hard. And that version of me is someone I respect.
I am not grateful for my illness. But I am proud of myself for surviving it. And that is enough.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
You’re not alone here. You’re welcome to stay as long as you need.
Frequently Asked Questions
What is an invisible illness?
An invisible illness is a condition that cannot be easily seen by others. Someone may look well on the outside while living with chronic pain, fatigue, or other ongoing symptoms that affect daily life. Because there are no obvious signs, invisible illnesses are often misunderstood or overlooked.
Can you look healthy and still be chronically ill?
Yes. Many people with chronic illness appear healthy but still experience significant physical or mental symptoms. Looking well does not mean feeling well, and this disconnect can make it harder for others to understand the reality of living with an invisible condition.
How do people cope with invisible illness day-to-day?
Coping looks different for everyone. For many, it involves pacing, listening to their body, managing medication, setting boundaries, and adjusting expectations. Acceptance often comes slowly and living day by day becomes an important part of managing both physical and emotional wellbeing.
Why is invisible illness so hard to explain to others?
Invisible illness is difficult to explain because symptoms fluctuate and are not always visible. People may struggle to describe pain, fatigue, or brain fog in a way that feels valid to someone who has never experienced it. This can lead to feelings of isolation or not being believed.
How can you support someone with an invisible illness?
The most important support is listening without judgement. Believing someone’s experience, being patient with cancelled plans, and avoiding unsolicited advice can make a huge difference. Often, simply acknowledging their reality is enough.
