“I’ve ticked so many boxes, just by cutting off my hair”

When Michelle O’Hare from Belfast was placed on the transplant waiting list, she decided to go for the chop – raising over £6,500 for the PHA UK in the process. This is her experience of a challenge which sparked conversations about her illness and enabled her to give something back.

“I was diagnosed with pulmonary hypertension out of the blue nearly seven years ago, and in early 2018 I was listed for transplant.

It occurred to me that I was waiting for someone to donate something to me, yet I couldn’t even donate blood. That’s when I thought about my hair, and how I could give it to the Little Princess Trust to make wigs for children who have lost their own due to illness.

I decided it would also be a good opportunity to raise sponsorship for the PHA UK. It quickly went up into the thousands, and I was amazed.

So many of the donations and messages on my JustGiving page were from friends of friends and friends of family; it wasn’t just people from my inner circle. The ripple effect that it had was just amazing.

Initially I was quite private about being ill, until I had to take medical retirement from my job as a teacher. Obviously close friends and family knew there was something wrong with me, but I avoided openly discussing PH because people don’t really know much about it.

When I announced I was doing this challenge and started asking for sponsorship, for many people, it was the first time they realised I was ill.

Initially I just sent out private WhatsApp messages, but then I decided to tell people what I was doing on Facebook. Within a few minutes the donations started coming in, from former colleagues, pupils, parents of pupils, and more. Reading about the challenge helped people understand PH and what it means.

It felt great just to get it out there and let people know I was ill. It was my way of saying ‘yes I’ve got this, but I’m getting on with my life’.

Because I look completely normal, people see photographs of me out with friends and think everything is fine, but they don’t realise I’ve had to rest the day before and then spend two days recuperating afterwards, just so I can go out for dinner.

Using the challenge to start conversations was a good way of explaining this to people.

As well as helping children, raising money and generating awareness of PH, the challenge also helped people understand the importance of organ donation. I’ve ticked so many boxes, just by cutting off my hair.

I felt amazingly calm the day it all came off, which surprised me. My sister came with me and the hairdresser allowed her to make the first cut. She burst into tears because of the significance of it all.

I had 11 inches taken off and my hair is easier to manage now. My PH means I don’t have much strength in my arms so just drying it when it was long was a workout. I do plan to grow it out slightly though, so I can tie it back in order to keep it away from my IV line.

I feel a bit guilty sometimes because I did really like my long hair. But whenever I think back to how much money was raised, I can’t have regrets.”