Islander opens up about "invisible illness" struggle

Thursday 26 September 2019

A young islander has opened up about the ‘invisible’ disease that led her to “lose friends, quit jobs and put life on hold” for the first time since her diagnosis to increase understanding and bust the myth that it only affects elderly people.

Mairéad Cahill (23), who has arthritis, is sharing her story for Pain Awareness Week, which aims to raise awareness of the challenges faced by chronic pain sufferers in Jersey.

Pain-causing conditions can often be 'hidden' to the eye - so hidden, in fact, that few people realise as many as one in five islanders suffers from persistent pain, with 2,000 people referred to the hospital's Pain Management Service each year.

Pictured: 2,000 people are referred to the hospital's Pain Management Service each year.

10,000 locals that the condition has a significant impact on their ability to do usual things in life - whether moving, exercising, working or even sleeping. Unfortunately, those physical problems are often exacerbated by others' lack of understanding, which can impact relationships and mental health.

Among those affected by chronic pain is Mairéad, who opened up to Express about her personal journey that started when she was 20...

"Every person at one point or another has felt physical pain - maybe with a broken bone, a headache or in a brief sharp dig from a stubbed toe on a kitchen corner. The point is, we all know what pain feels like and maybe you shake it off, rest a little, go see a doctor and fix the problem or take some pain killers and life goes back to normal.

That is, unless you’re one of the 28 million adults in the UK that has chronic pain.

Chronic pain doesn’t go away. Sometimes it flares up worse than other days or some days you don’t notice it as much - but it doesn’t go away and life doesn’t go back to normal. 

Pictured: For most people, pain is only temporary, and can be resolved with simple painkillers.

Three years ago, I noticed my feet hurt when I got out of bed in the morning. It was difficult to get out of bed, as I just didn’t feel myself. I noticed I struggled to get toothpaste out of the tube and holding my morning cup of tea was painful.

As the weeks and months went by, it got more difficult and it wasn’t until I told my mum, who has auto-immune Arthritis, that it hurt to type at work that it clicked and I went to see a doctor. It had never crossed my mind that I could have what my mum did because I was 20 at the time and she got it in her 50s. Young people don’t get arthritis, they just don’t.

Well, I quickly learnt that young people do get arthritis and that it’s not just a bit of pain in your hands or your feet.

Over the years, the disease has spread throughout my body even to the point where I was hospitalised because it flared up in the intercostal joints of my ribs. Arthritis made it painful to breathe.

But here’s the thing: you wouldn’t know any of this by looking at me.

Pictured: "You wouldn't know any of this by looking at me," reflects Mairéad, who was taken to hospital as her arthritis made it difficult to breathe.

Autoimmune diseases and the chronic pain they cause are invisible. And whilst I’m glad a lot of the time that I don’t look as bad on the outside as I feel on the inside, it can be a difficult thing to deal with.

People look at you funny when you take a priority seat on the bus because they don’t have the X-ray vision to see my inflamed joints that I am battling or don’t realise the toxic medication I’m on makes it difficult to complete the simplest tasks like standing.

At my worst, I’ve had to take a break from showering because the amount of energy it took to get up and in the shower exhausted me to the point I couldn’t finish washing my hair and had to try again later.

I’ve never known tiredness or pain like it - it’s all consuming and when you deal with it every day it can be an isolating experience.

I’m lucky to have an incredibly supportive family, amazing doctors who haven’t given up on me two-and-a-half years into fighting this, and some great friends that take the time to understand what I go through. 

Pictured: "People look at you funny when you take a priority seat on the bus because they don't have x-ray vision."

Autoimmune Arthritis and the chronic pain it causes is life-changing. But that doesn’t stop the barrage of ridiculous comments I get like, “But you don’t look that sick”, “It’s just pain, take some paracetamol” or my personal favourite of, “You’re too young to have arthritis” Am I? Great! I’ll let my body know it can stop attacking my joints then. Tell it to come back in 40 years.

I’ve lost friends, quit jobs and put my life on hold due to a disease that if you looked at me, you wouldn’t know was there. And that’s the reality for many people struggling with chronic pain and auto-immune conditions. Our lives are controlled by a disease that you can’t see, don’t often hear about and most people don’t understand. 

To be honest, my condition isn’t something I talk about a lot to people that aren’t close to me. But when Express asked if I’d write something for Pain Awareness Week I said yes because I want to raise awareness about the issues that people with the condition face, especially young people.

As we get better at diagnosing these conditions, it’s more likely that you’ll come across someone with chronic pain. If you do, here’s what I’d recommend: don’t tell them how to fix their conditions. Diets, exercise and supplements have their place, but they aren’t going to stop my immune system from attacking me and causing this chronic pain. 

Pictured: Mairéad is learning how to cope with her condition, and was able to visit Glastonbury this year thanks to a special access pass offered to those with disabilities and chronic illnesses.

Now that for the the first time in three years I’ve sat to write about my disease, I realise it sounds quite depressing. There are certainly times over the last few years when I’ve hit a low. But I do think, despite the chronic pain and all the complications that come with autoimmune diseases, I am a relatively positive person.

I know for all the bad days I have, I get good days where I can act like a normal 20-something year old.

I know that, for all the failed medication attempts and different treatments I try, there are more options to look at still and they’ll be even more to come as research continues. And I know that, whilst I never thought I’d be 23 and back living in Jersey with my parents, one day I will get to travel the world and have a career not just a job. 

You see all across social media quotes that say “your health is your wealth” and “without health, everything else means nothing”, but it’s not true.Like most people with auto immune diseases and chronic pain, I’ll never have my health back. There wont be a time when I’m “better” because there is no cure.

All we can do is to get better at managing the pain and at managing life - and I am getting there, I’m just taking the scenic route."

Pictured: "One day I will get to travel the world, and have a career, not just a job."

A series of events have been held for the public, as well as professionals for Pain Awareness Week, which you can find out more about by clicking here.