I hope my story may resonate with other carers and raise awareness for Myalgic Encephalomyelitis or ME.

‘I am not scared of dying. What scares me is that you can disappear because someone is telling the wrong story about you.’ – Jennifer Brea [1]

Sam, my only child, came down with severe chickenpox nearly 11 years ago in year 12 and never recovered. We had no diagnostic test, no treatment, no prognosis and practically no support. Since then our lives have completely changed.

Sam was determined to finish his Higher School Certificate (HSC) and study Architecture, his dream career. He took an extra year and completed the HSC mainly from home by the skin of his teeth but ended up sicker and housebound.

The stress of achieving this crazy goal was huge on us both. It was obvious from the severity of his physical symptoms, and his lack of memory and concentration, that I had to take on the load, but counterintuitive at the same time.

Here was a young man who needed to grow up and wanted to become more independent. For his mental health he needed to have purpose and activity, but even sitting up could be too exhausting and pushing himself caused crashes or relapses.

LEARNING ABOUT MYALGIC ENCEPHALOMYELITIS (ME)

We discovered the cruel reality for ourselves about ME. It’s a common but devastating neuro-immune illness, often triggered by a virus, which can affect all the body systems, with no cure.

Historically it’s been lumped in with ‘chronic fatigue’ or ‘CFS’, a wastebasket of vague symptoms, often wrongly attributed to female hysteria, with huge negative consequences: most cases are misdiagnosed and mistreated. The wrong story has been told. Even the name is not agreed.

There are a myriad of symptoms and abnormalities. [2] Post Exertional Malaise, the unique defining symptom, means the more you do, the more you pay – your symptoms worsen from only a slight increase in activity beyond your limit. An anathema to our attitude to health and rehabilitation.

BECOMING A CARER

Our lives and daily routine became interwoven as we took on this cruel illness together.

Pacing every activity, the best management tool as it turned out, meant I had to stay close to help him so he could rest. I had become his full-time carer.

But with an illness that is so misunderstood and stigmatised as laziness, or even maintained through fear of activity, despite strong scientific evidence to the contrary, my role as a carer was in question by friends and family.

I floundered amid so much judgement, confusion, self-doubt and lack of any help to know how to best care for my son. I had to defend him and his illness to people who had no idea and certainly offered no support.

HE HAD ‘DISAPPEARED’ AND SO HAD I

People didn’t visit and Sam could rarely go out, so they couldn’t know how ill he was. He had ‘disappeared’ and so had I. My own mother accused me of treating him like an invalid and assured me he would recover if I only let him be more independent.

I was thrown back onto my instincts searching for answers.

I was alone, with no family in Australia, and physically and mentally exhausted, but I had to keep myself going to keep him going. And he inspired me each day with his patience and positive attitude, despite his predicament. He rarely complained.

We shared so many moments: reading, watching his favourite sci-fi shows together and bringing the world outside to him through photos, little gifts and funny stories. I feel privileged that we still do.

By then we had a wonderful doctor who understood and helped treat ME (a rare find as there is no medical specialty or training for ME in Australia). He even welcomed me into his appointments. But I felt constant anguish seeing Sam so ill, guilt at all the things he was missing out on, and fear of him getting sicker.

With a compromised immune system, a simple cold could be a serious setback. Any increase in activity or stress could trigger a relapse.

WE WERE LIVING AS IF HE WOULD GET BETTER SOON

But it didn’t work. Sam caught glandular fever and that was a huge 4-year setback. He became more bedbound and in greater pain. Eventually, I had to let go of that belief, while holding onto hope, even though he was too young himself to look as far ahead as I could.

How would he manage if he couldn’t work? I was struggling to hold down irregular casual work and getting older. Who could look after him if I couldn’t? His energy levels were like a battery which never charges beyond 20%. But mine were also diminishing.

I could see that I couldn’t keep managing alone. I’d already discovered that there were no government support services for us for this unrecognised illness. So, I started looking for help for myself.

CARERS NSW OFFERED COUNSELLING

It was a wonderful outlet. Now I was determined to have a break for myself and perhaps to deal with the bottomless, overwhelming grief I felt and the worry about the future. It took another 2 years before I made it to Quest’s Healing Your Life program.

The first morning at the retreat I joined the breakfast queue and was overwhelmed that I wasn’t taking breakfast up to bed to my son for once but being served it myself!

I ran out in a whirl of emotions and came back when I could compose myself to focus on the scrumptious meal. It was a wake-up call to find a life for myself again.

At Quest, I was given a safe, nurturing and truly compassionate space for me to think about my own needs and hear others’ experiences. My story and my role as a carer were heard and validated. It was just what I needed and so much more than I expected.

I’M SO THANKFUL FOR THE LESSONS I LEARNT

They sustain me even now 3 years later and give me the courage to reach out to people who will accept my reality and to stop feeling so hurt by those who don’t.

I learnt to

• take a day at a time
• smell the roses
• meditate
• do gentle exercises
• find other ways to look after myself (including an annual respite break no matter what!)

as well as to keep looking after and learning from my son, who is so much more than his horrible illness.

ONLINE SUPPORT

I’ve found special meaning and hope in joining forces with other families online who’ve been devastated by ME and to advocate for change in small ways that I can for health equality.

I’m encouraged that attitudes are beginning to change. Research is finally happening and perhaps soon real recognition and funding, as has been the case with ME’s probable neurological cousins, MS and Parkinson’s.

I’m no longer alone. Neither is my son, who is running his own young people’s support group for ME and is slowly studying Architecture again online. His dream is still alive.

YOU DESERVE TO BE SUPPORTED

I think it’s very easy to put the loved one you care for first because you know their needs are so much greater than yours, but you are so valuable, and you deserve to be acknowledged, respected and supported, too. Your story should be heard and accepted, even if not understood.

If you are facing the stigma of this kind of illness, you may just have to fight harder for it!

MORE INFORMATION ABOUT MYALGIC ENCEPHALOMYELITIS

• Visit Emerge Australia

CARER SUPPORT

• Quests’s Toolkit for Carers
• 1-day Workshop with Petrea King Living Mindfully: Caring for the Carer – 7 December

REFERENCES

[1] Jennifer Brea quote from her highly recommended movie on Netflix: ‘Unrest’. Director Jennifer Brea’s beautiful story of her own and other families’ experiences of living with ME. View Unrest

[2] Symptoms – see Emerge Australia