I am writing this after a day at work, I am a bit sleepy but am feeling pretty good. At the moment I work one day a week for some family friends who are very flexible and understanding about my having CF. I am able to take time off for hospital admissions when needed and have been told many times that they are OK with all that having CF involves. I find it really rewarding to work and although it hasn’t always been possible to do so, it is something that I feel is important to do and not just for the money.
When I was in high school, preparing to leave the children’s hospital as I was just about to turn 18, I was like thousands of other teenagers being told they needed to decide right now what they wanted to do with the rest of their lives. At only 17 this is a huge task, I barely know what I want to be now at 27, let alone when I was 17! I was discussing this with some hospital staff and I was told by one lady “You have CF, just been grateful that you can get the Disability Pension. You don’t need to work nor should you, really.” Well, I can tell you, everything about that statement made me what to rebel against it (and it wasn’t just because I was 17!). I had got my first after school job bang on 15 years of age (the legal working age). By the time I left school I had already had 2 part time jobs. I really wanted to work. I liked the feeling of working. It made me feel independent and capable. I liked the social interaction and the mental stimulation. It was important to me to work. And so I did.
After school, I took a job in a bar (not the best choice for someone with lung disease but it was fun although plenty of hard work). I then moved into administration, then small business administration, then I found myself in a traineeship with the Dept Of Justice. I really enjoyed my work and had a good handful of positive references. I was always up front from the start that I had CF. I did not want to get into a job and then have them change their mind when they found out I had to have regular time off (even though that is apparently illegal!). In fact, for the Justice job interview I printed off some information about CF and CF in the Workplace and when it came time for me to ask them any questions I told them that I knew I didn’t have to tell them this information but I wanted to have a good, clean start if I got the job. I then proceeded to tell them I had Cystic Fibrosis and gave them the information that I had printed off. The looks on their faces was amazing. I walked out of that interview knowing that I had done my best and been completely honest with them. I felt good. I felt even better when I found out that I had got the job over 4 other candidates. And that it was my initiative and honesty that had got me the job. No one had ever given them information at an interview before! I learnt that it is important to be upfront about your problems if it will effect your ability to do the job, people will respect you more for it and if they react badly to it just imagine how badly they would have reacted if you had got the job and then needed time off when you were sick. You don’t want to work for people that will not understand your dilemma. And you would be surprised how much people appreciate honesty.
I really enjoyed my time at Justice and I was very sad to have to leave when I became too sick to work. I think it was a contributing factor to my depression. I just wondered “what now?”. Happily, I can say that although it took me 2 years before I was healthy enough to go back to work for my friends I have kept in touch with my old workmates at Justice. Last week I got a call from one of them and they offered me some work back in the trenches! I am so happy. They told me that even though I have health problems they are willing to work around that because I have a good attitude and other people like working with me. That is an amazing compliment.
So while it is not a necessity for me to work, I do so anyway. I do it for the pleasure of it. The feeling of satisfaction I get from it. I also had to learn the hard way you cannot always work, sometimes your health MUST come first. All in all, I recommend working part time in a job you enjoy, if you can. It will keep you in touch with the world and will give you something to focus on other than your illness. I have also seen the difference it makes in a persons confidence and wellbeing to have something that makes them feel like a contributing member of society. And not quite so much like a “sick: person. Remember, if you can do it, do it with your health foremost in your mind and then go out and enjoy yourself!!
All the best, Lily
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