My teen son threw a garden party for me and my friends when I was desperately ill

"It was a beautiful fundraiser for my rare disease; and a silver lining to this frustrating and painful journey."

My name is Lucy, I am 49, a mother of two teens; and I have the chronic disease Relapsing Polychondritis. But there's been a huge silver lining for me.

RP is a painful, degenerative, multi-systemic, potentially fatal, mostly invisible and chronic rare disease that primarily affects cartilage.

RP causes arthritis, heart, lung, eye, ear, skin and nervous system problems. The incidence of RP is thought to be about 1-3 per million people - I like to say that I always knew I was 1 in a million!

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"They were lonely and confused - so was I"

In January 2018, I felt a lump on the back of my head. Then I developed a multitude of seemingly unrelated symptoms and became very unwell.

I was fortunate to have excellent medical care but after many tests, months later my doctors were still no closer to a diagnosis.

I often think about how my kids felt during that time. My son was in year six and not coping well at school but also feeling that he was not able to seek support from teachers and friends.

My daughter was in year four, so little to be forced to be independent, and needing a lot of love.

Looking back, they were lonely and confused - so was I. During that time, I wasn’t capable of looking after my kids in the way I wanted to.

I was often in a lot of pain and so unwell I was unable to get out of bed even if I tried my hardest. The kids not only had to look after themselves but me too.

My daughter would write me little notes and do cute drawings for me, my son would make me tea and snacks, heartbreaking and heartwarming all at once.

They were little people with big feelings.

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"I know that having a sick mum makes my kids’ lives harder"

Raising awareness about rare disease and especially RP is so important to me.

I hope my story helps someone else with a quicker diagnosis, access to treatment or a better understanding of RP and rare disease. Although I cannot live the life I planned, I try to make it count and face the obstacles with good spirits. The physical challenges and constant ups and downs take a lot of mental strength to get through, it can be hard to find that extra bit of mental energy, especially when my RP life wears me down.

My family and friends are incredibly supportive, especially my husband and our kids.

I know that having a sick mum makes my kids’ lives harder but it has made them mature and understanding. I am so proud of their independence, empathy and kindness. My son is now in year 12 and as part of his studies he had to do a service project. He and a friend decided to raise money for Rare Voices Australia, the peak body for rare disease in Australia.

We hosted a high tea for Rare Disease Day, with all the trimmings - fine china, live jazz, scones and cakes. I was so proud to see my kids and my son’s friends baking, setting up, serving and cleaning up but most of all their friends learnt about RP and rare disease.

There is no limit to how truly moved I was that day. I am even more conscious than ever to embrace all the moments with the kids.

I am grateful my kids were a bit older when I first got sick, I don’t know how I would have coped with little ones.

Huge applause to those who have to with or without support from partners and family. Being a sick mum sometimes makes me feel guilty even though I know it’s not my fault.

Although my kids sometimes miss out because I’m sick, in the long term, I know that they will be better humans because of it.

I want to say to all the sick mums reading this that our best is good enough, it just has to be but if it feels like it isn’t, please seek support, there is no shame in that.

You can read more about Lucy's experience at Rare Voices Australia, which received the proceeds of her son's fundraising efforts. 

Originally published as My teen son threw a garden party for me and my friends when I was desperately ill