By: Vikki Patis
How many of us who live with a chronic illness still have to work full-time? Whether because we don’t qualify for disability benefits or we simply need the money, many of us still have to drag ourselves through a 9:00 to 5:00 day, dealing with the stresses of having a job on top of our chronic illness.
When you’re caught in a flare, dealing with bad days at work can take its toll. I used to work in customer service, and sometimes I’d have customers shouting in my ear about one thing or another. I used to have chronic headaches, bordering on migraines, and those types of calls could really grind me down. During particularly bad periods, I’d go home exhausted, change into my PJs and be in bed by 8:00 p.m. Every morning, I’d wake up to my alarm, surprised an entire night had passed. Had I really had 10 hours sleep? It felt more like 10 minutes. Before I started treatment, my sleep was never refreshing, and I felt bone-tired every day.
When we catch a bug that’s been going round, it can really knock us down. Having a cold when you struggle with fibromyalgia can make everything so much worse. While others may be able to struggle through with a sniffly nose, I can rarely continue to function when I’m ill. Usually, if I have a cold or something similar, I’m out for at least a week, stuck in bed, feeling sorry for myself. The pain levels increase, I’m incredibly tired, and I just feel awful. I don’t get unlimited sick pay, and I have had to miss out on pay because I’ve been ill in the past. It’s an awful feeling, having to decide whether to earn less and cut back that month, or drag yourself into work.
Because, let’s be frank – having a chronic illness like fibromyalgia can be expensive. While I live in the UK and have access to free healthcare, what I need isn’t always available, so I have to pay for some of it privately. I’ve paid for sports massages, physiotherapy and Pilates classes. I also pay for my prescriptions, which isn’t very much, but is still a consideration. What would happen if I couldn’t afford these things? They help me get through the days; they actually contribute to making the fibromyalgia easier to deal with.
Despite all of the above, it is something you get used to. It’s amazing how humans can adapt, and all of us who are in similar situations have managed to adapt to living with quite a horrible disorder. But to our friends and family members who don’t have to deal with a chronic illness, us going to work full-time can make it seem like we’re OK. You might have heard something along the lines of “if you can manage to go to work, you can manage to go out for dinner with me.” I know I have. What many people don’t understand is it can take all of my energy to go to work and earn the money I need to live. There’s usually nothing left for coffees or lunch or the cinema.
Living with a chronic illness can involve a lot of compromise and, unfortunately, that can mean that you miss out on a lot. But my priorities are having a roof over my head, food in the cupboard and a happy household (and happy cats!). I’m also dedicated to my career, refusing to let fibromyalgia dictate my future. It can be hard, but I manage it, because I have to.