Living with chronic pain

Sarah learnt that living with chronic pain is an obstacle, not a limitation.

Read on to learn more about chronic illness and hear Sarah’s personal experience of what it’s like being a teen and  living with chronic pain.

This can help if:

• you have chronic pain or another type of chronic condition

• if you struggle with chronic pain symptoms and want to know what to do when chronic pain becomes too much

• you know someone living with chronic pain

• you want to know what it’s like to live with a chronic health condition like chronic pain. 

Growing up with chronic pain

My name is Sarah. I’m 14 years old and I have chronic pain.

The pain started when I was six. I didn't say anything about it, because I thought everyone else was having the same pain and that if they weren't complaining, I’d just have to deal with it, too. Every year the pain got worse until, in October last year, I was admitted to hospital. I was in a wheelchair and couldn't walk. My doctors told me to stay in bed and not to move, but I found that extremely hard. I tried standing up every now and then, but the pain was too great and I kept falling down.

Questions about chronic pain left unanswered

Every day I went in for new tests and was prescribed all sorts of medications with terrible side effects, including depression, memory loss and weight gain. The depression was the hardest part – even worse than the fact that I couldn't walk, or that I hadn't seen my friends in months.

I used to be the bubbliest and happiest person you could ever meet, but then when I went into hospital I spent half the time crying because of the amount of pain I was in. I didn't sleep for weeks. My doctors didn’t know what was wrong with me. My chronic condition left them with more questions than answers. Some of them said I would never walk again; that I’d be in a wheelchair for the rest of my life. It was so hard for me to remain positive.

All my hopes of making it as a professional singer disappeared. I mean, who would want to hire a singer who’s confined to a wheelchair? My condition was going to ruin my life and it didn't even have a name. I hated being stuck in a tiny hospital room, but every time I went out everyone stared at me.

How did I go from being able to go anywhere, with no one giving me a second glance, to having everyone stare at me now that I'm in a wheelchair? I felt alone, and that I’d never have a normal life. I was exhausted and just wanted to curl up in a ball and shut everyone out. By then I was constantly in and out of hospital, but still no one knew what was wrong with me.

Changing my attitude changed my life

Finally, the doctors settled on the cause of my pain and I was diagnosed with hypermobility syndrome – a condition in which you have very flexible joints that cause chronic pain symptoms. I was placed in a two-week rehab program to help me regain some mobility. While I was there I met a girl who had a similar condition to mine, but she’d had it for a lot longer than I had. We became fast friends and would stay up until the early hours of the morning talking. She was truly inspirational.

Eventually, I was able to get out of the wheelchair, and my new friend was teaching me how to be happy with myself. She kept stressing that my condition was an obstacle, not a limitation. She taught me that life isn't going to be perfect and that's okay; we just work with what we have. I’m now out of hospital and well on my way to recovery. I can walk – and even run – now, which a year ago I would never have thought possible. I don't believe I would have made it to where I am today without my friend. Sometimes, all you need is a friend to talk to and help you get back on your feet again.