Fibro Blogs, Fibromyalgia

What It’s Like To Be A Young Adult With Fibromyalgia

When I was diagnosed with fibromyalgia, the only people I knew who had it were far older than me. When I started to look into it though, quite a lot of young people do suffer with it but it isn’t often diagnosed till much later in life.

My first symptoms started when I was 13 years old and it was very hard to get anyone to believe the pain I was in. They all said I was too young to be in pain, that it was just growing pains. I’m sure many people struggle to get a diagnosis but it is definitely harder as a young person as many believe you can’t get it that young. The truth is that you can get fibromyalgia at any age.

The worst part about having this chronic illness at such a young age is seeing how people who are older than me are suffering and fearing that if I already feel this bad, surely it can only get worse. But I does also give me time to try out different treatments and hope to find things that will work. Still, the fear is always in the back of my mind. If I already suffer this much, surely as I age my body will weaken even further and lead to more severe symptoms.

I was diagnosed at 23 years old after 10 years of my symptoms slowly increasing until I had pain and fatigue 24/7. I felt very alone at first, knowing nobody else my age who was going through the same thing. I ended up going to online communities for support and did find some others like me. It helped me feel better that I wasn’t completely alone.

I definitely feel old before my time. I can’t sit on the floor for long at all, can’t stand still for long or I seize up. I have to always plan ahead to know I can leave somewhere if I need to. I carry a pharmacy with me in case my symptoms flare. I can think of nothing better than relaxing at home being surrounded by comfort. I feel like I should be retired by now! Instead I need to work my entire life with this failing body. Will there be anything left of me by the time I eventually retire? My parents in their mid-60s are healthier and fitter than me. They can run rings around me and touch their toes and rarely have pain.

Seeing my friends all out socialising while I have to cancel so often just makes me seem anti-social. They don’t understand how I can be suffering so much that I have to cancel plans and rest. I shouldn’t need rest at my age! I’m 26 and was never able to experience an all-nighter. I want to go out and just enjoy my time, but the pain and fatigue is always there. I can’t just forget about it completely, it won’t let me. I really tried many times to stay out late but I would end up not enjoying myself anymore. The pain and fatigue would get overbearing from pushing myself and I would just end up miserable.

Lots of people who don’t know me that well think I’m just boring when I don’t join in. It’s impossible to explain how I feel and for them to understand. I don’t blame anyone for that but it just isn’t nice to be left out. Some stopped inviting me altogether as they knew I wouldn’t turn up. I always want to be invited just in case I can go than not even be asked in the first place. I do want to be out having fun, and I do manage to do it, but in small bursts, always pacing to ensure I don’t overdo it.

I’ve learnt to enjoy the smaller things and I think I’ve become wise a lot younger than most as I’ve learnt to be happy just being me. I don’t need the constant parties and socialising to feel part of something. I love being out in nature and relaxing. I enjoy going to restaurants and playing games, reading and writing. I have hobbies but they are just different to healthy young adults. I don’t feel so much like I’m missing out anymore but instead like I’m levelling up quicker in the game of life and just enjoying my life as best I can under the circumstances.

Don’t get me wrong, feeling this old sucks! I wouldn’t want anyone I know to be going through this. I wouldn’t wish it upon anyone, but unfortunately there is no choice in the matter. I wish there was more understanding and acceptance of young adults with fibromyalgia or just chronic illness in general. Nobody wants to feel this old before their time. Nobody wants to miss out on fun events. Nobody wants to worry about how bad they might feel in the future. That’s just the reality of my life. I make do and find ways to enjoy life anyway.

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