This is a little off-topic for this space. Normally, I write about fibromyalgia and ME/CFS. But today, October 12th, my little sister would have turned 30, and I’m finally ready to share part of her story. It connects to invisible illness; it’s a dedication to who she was, and I hope it raises awareness of a condition that is far more dangerous than most of us realise.
The road trip
After my parents divorced, my dad and I went on one of his architectural road trips, which I joined now and then. Out of nowhere, he asked how I’d feel about having additional younger siblings.
I was shocked, and I answered from a place of hurt. I lived with my mum and visited him, and I thought: you could have spent more time with us, and now you’re thinking of more children? We left it there and never spoke of it again, until my dad and stepmum had my little sister.
When she was born, I adored her. I never saw her as half of anything. She was my sister.
As she grew into a little person with her own expressions and needs, I grew fonder and closer to her. She had a graceful nature: thoughtful, caring, almost angelic. She gave beyond her immediate family and quietly served her community, never seeking recognition.
We shared something, too. In my dad’s household, she was the eldest, just as I am the eldest in mine. I would look at her and think, you’ve taken on the big sister’s responsibilities, and I felt protective, wanting her to have her childhood still.
Then life took a hard turn. My stepmum passed unexpectedly, though I knew she’d been unwell. My dad followed not long after. About two or three years later, my sister began to develop an underlying condition that none of us knew about. There was a misdiagnosis.
Cardiomyopathy and Chronic Illnesses
It wasn’t picked up. She had cardiomyopathy, an invisible and deadly condition. When it isn’t recognised in medical examinations, it can quietly affect the heart until it causes serious harm.
By the time we knew, we did everything we could. We searched for the best facilities and the best doctors, but it wasn’t enough. I learned so many lessons along the way.
Before this, I knew about diabetes and high blood pressure. My dad had diabetes, and some extended family had high blood pressure. These were well-known conditions, and I thought of them as things adults get as they age. Cardiomyopathy was a shock because it struck someone young. I knew of young footballers who collapsed from cardiac arrest, but I’d never put a name to it until it hit closer to home.
We flew out to get her the best medical care. During her second examination in hospital, she went into sudden cardiac arrest. I had just stepped away for a few minutes with a family member when a doctor came rushing to say Lorraine had collapsed.
Time stood still. I felt stuck, as if I were in a movie, unable to move or speak. A nurse offered me water; I felt hot, and I saw stars sparkling around me. It was shock. I made myself stand and walk down the corridor, past medics running and talking about transferring her to the main hospital, trying to find my courage to reach her.
She was taken straight to ICU, where they had to induce a coma to stabilise her. She woke only once. Her heart couldn’t sustain her being awake, and they couldn’t stabilise her condition.
I’m grateful I was with her, though I wish it had been earlier and under better circumstances. I noticed her quiet presence, her resilience, and her determination to fight, even when she couldn’t breathe easily. She stayed alert and calm so she wouldn’t put her body into a panic, doing everything she could for the best medical attention. She stayed resilient through months in that coma.
During that time, I learned to find peace in a conflicting time. When you should be focused only on the person you love, there are insurance matters, financial questions, hospital management, and different people needing something from you. I had to hold all of that while keeping my attention on her.
What is cardiomyopathy, and why can it go unnoticed?
This part is general information, and I’m not a medical professional. For authoritative guidance, please see the resources at the end.
Cardiomyopathy is a group of diseases of the heart muscle. The muscle may become enlarged, thickened or stiff, so the heart struggles to pump blood around the body. There are several types, including dilated, hypertrophic, restrictive and arrhythmogenic cardiomyopathy. Some forms run in families, while others can develop from other causes.
Symptoms can include:
- Breathlessness, at rest or during activity
- Tiredness and fatigue
- Swelling in the ankles, legs or abdomen
- Palpitations or a racing, irregular heartbeat
- Dizziness, light-headedness or fainting
- Chest discomfort
Why it can be invisible:
- Some people have no symptoms at all for a long time, and may look completely well.
- Symptoms such as tiredness, breathlessness and dizziness are common and can be mistaken for other things, including stress, anxiety, asthma or simply being run down.
- Not everyone has the same type or the same symptoms, so it can slip past a routine check.
- In some cases, a sudden cardiac event is the first sign.
That last point is why I think awareness matters. If you have unexplained breathlessness, fainting, palpitations or chest discomfort, or a family history of cardiomyopathy or sudden unexplained death at a young age, please raise it with a medical professional and keep asking if something doesn’t feel right.
I see you
What I most want to say is this: I see you.
If you’ve lost someone suddenly, especially to an invisible illness, I see you.
And if you’re living with a challenging invisible chronic illness, I see you too.
It isn’t easy to make professionals understand what you’re going through when you look well on the outside. It’s hard to explain an internal struggle, and harder still after years of being misdiagnosed or dismissed.
Life is too precious
We hear that “life is too precious” all the time. It lands differently when it hits close to home, whether through loss or through your own illness.
Through my own trials, I’m always connected to what my sister went through, and to losing my dad, whose death was also unexpected. They would have wanted to live. My sister fought so hard.
So when I’m in a flare, or struggling to explain myself to a doctor who doesn’t understand, I tell myself: be patient, keep going, keep fighting. When it feels like I’m up against a wall that can’t be broken, or in a sadness that won’t lift, I remember there were losses before, and that I’m still here to keep going. I take it one day at a time.
A lifetime plus infinity
I’m forever grateful for my mon petit ange, my little sister, who came into my life for such a short time. In her 18 years, I believe she lived to the fullest she could. She was taken too soon, yet she gave so much with her heart. She taught me lessons I’ll never forget.
Lorraine, I will love you for a lifetime plus infinity. There’s not a moment, not a second, that I don’t think of you.
And to everyone who has sat with me through this, thank you for being here. Until next time.
If my story spoke to you, whether you’re living with an invisible chronic illness or missing someone you’ve lost, I’d love to hear from you in the comments below. Tell me who you carry with you, or what keeps you going on the hard days.
I see you. You are not alone.
Yesterday, October 11, was International Day of the Girl Child, which recognises girls’ rights and the challenges they face worldwide, including their health. I’m thinking of Lorraine, and of every young woman whose symptoms deserve to be heard and to have access to health services.
Helpful resources
- Cardiomyopathy UK: cardiomyopathy.org
- British Heart Foundation: bhf.org.uk
- American Heart Association: heart.org
Access Useful Fibro & ME/CFS Resources I’ve put together for you.
For more of my writing, you can also follow Diary of Fibro Warrior on Substack.
Disclaimer: This post shares my personal story and general educational information only. I’m not a medical professional, and nothing here is medical advice, a diagnosis or a substitute for professional care. Symptoms like these have many possible causes. If you’re worried about your heart or your family history, or if you have sudden chest pain, severe breathlessness or fainting, please speak to a doctor or qualified healthcare professional, and seek emergency help immediately where needed.
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