Spoonie Spotlight: Sarah Hayes

Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!

What’s your diagnosis?

Hypermobility syndrome and POTS

When were you diagnosed?

Hypermobility syndrome 2 years ago and POTS 6 months ago t

How long have you had symptoms?

3 years and some odd ones here and there during childhood

Have you been limited in any way from your illness? If so, how?

Yes. I can’t work more than a few hours a week, I had to stop working with horses and my time spent with them is drastically reduced. I often can’t join in with social things with friends and family. I occasionally walk with a stick which helps a bit. I’m at the doctors more than anywhere else it feels.

What’s your story?

I started working my dream job almost 4 years ago. It was at a ranch themed outdoor activity centre working with horses. 6 days a week, sometimes 7, it was hard but great. I started having to take days off due to fatigue and pain in muscles and joints after less than a year working and we all thought I was just overworked so I reduced my hours but it didn’t help. I went to many doctors but I eventually was diagnosed with hypermobility syndrome. By this point I was only managing 2 and a half days work and I still couldn’t manage. I had to leave my job and move back with my parents to focus on my health. I found treatments that help such as physio and the correct medication so I can live a somewhat more active life. I can cook dinner and do washing most days for example. The great ending is that I got married in May and moved in with my husband who I met at and who works at the activity centre I had to leave! This means I can be in the place I love and volunteer when I feel I can but have no pressure or expectations of me.

How has your illness changed your life?

I worry a lot more these days about what I’ll be like in the future. I also think I appreciate the small things more.


What are your goals for the future? (Not related to your health)

I would love to have 5 children and 2 dogs. Also I have a rabbit we are holing to breed with another for meat so being able to oversee and look after them would be good.

What are your goals for the future? (Health related)

I would like to get better at pacing so I am able to manage my tasks more easily. I’m also hoping to get medication to control my pots as the last worked but then stopped working. I’d like to get well enough to have kids.

Do you consider yourself handicapped or disabled? Why or why not?

I consider myself disabled because my illness means there’s a lot of stuff I can’t do, or I need aids to do. I don’t have a disabled badge or anything though as I thankfully usually don’t need one.

What would you like readers to take from your experience?

That living with pain and fatigue and everything else that comes with a chronic illness is hard and sometimes it’s harder than other times. But it doesn’t mean your dreams can’t happen or that you can’t do what you want with your life. You just might need more help or aids but you get there. A positive attitude for the future is the most helpful thing in my illness toolkit.


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