Keeping a roof over my family’s head has always been my priority no matter my circumstances this is my main goal – to ensure that my family are taken care of. I also really enjoy being an independent woman and having a career, I enjoy what I do for work and I enjoy my work environment.
I must admit when I was first diagnosed it was an exhausting experience, a lot of hospital visits and my levels were continually dropping so there was a lot of fear about treatment and what that meant in regards to maintaining my current lifestyle. But it’s been almost 2 years on and here I am achieving goals at work and living with chronic ITP.
I have always been very upfront with my workplace to ensure that my boss understood my condition. Below is a letter I had my doctor write up to my boss allowing them to know that although I have this condition and it may require treatment from time to time that I can still work.
My doctor asked if I was sure I wanted to disclose my condition but as I have said once before this condition doesn’t define me and therefor I should not be ashamed of it. Although this condition can drain my body with fatigue it can’t disable my mind. Therefor considering my position isn’t manual labour then I am pretty much safe to do my daily tasks. The only reason I shared my condition with work is to explain the sudden necessary "sick leave" required. To be honest only very few people from work know that I suffer from Chronic ITP nobody else has a clue and there is no need for them to know. I am however very lucky to work were I do, I have found my workplace to be extremely understanding and I am happy that those whom do know don’t hold me back or assume because of my condition that I can’t do as good as job as someone else
I must admit it’s not always easy managing the two (work and chronic ITP) some days it really does take its toll on me and all I want to do is sleep or laze around. However this is a toll I am willing to bare – the self-satisfaction I get from achieving things is far better than not doing anything at all. I do however need to ensure I listen to my body and take care of my self – so some weekends I will do absolutely nothing just to recovery from the week I just had.
The one thing that annoys me is the hospital visits – I have to use my sick leave to go to the hospital to get my regular check-ups (this doesn’t leave much sick leave for actually “feeling sick”). Hospital visits take forever but my doctor understands my situation and doesn’t want my condition to get in the way of my lifestyle – therefor we have come up with a game plan that majority of my visits are to be done first thing (first cab off the rank). This means I need to get up extremely early to get to the hospital, go straight to pathology and have my blood tests. Then I head over to the Haematology ward and wait for my doctor to call me in. Once this is all done and if my levels are ok then I can head straight back to work only losing a few hours’ sick leave rather than a full day.
So far things have been manageable and sometimes I get a really good run – for a while there my levels were evening out at approx. 30,000 – 35,000 so I could prolong the time between my visits to the hospital #happydays
I must however say none of this would be achievable without the support of my family. They keep me motivated, they understand when I’m not myself and they look after me when I’m run down. Support is important!
I can’t say everyone with ITP can maintain a career because not all patients with ITP are the same. But I hope this gives those like me a little hope that although this condition can take a lot out of you it doesn’t mean you have to give up everything you have worked towards.
If ITP has prevented you from working please comment your position and reasoning why? It’s great to share so we can all learn from each other.