CF is a tricky little bugger to understand, to learn and to explain.
When someone asks me what is it and how does it affect you my easiest answer is
"Its a genetic disorder which affects my entire body but mostly my lungs and my digestive system. It cause me to grow nasty things on my chest which make me ill and I have to eat plenty to put or keep weight on as my body struggles to maintain weight".
Thats about as short as I can keep it to explain it and normally people just say okay oh dear. Others say "oh how bad can it get?" Again thats tricky to explain without going into detail but I do try to reply normally with "Well I have to visit hospital regularly for check ups, I take about 50-70 tablets a day and I have to go into hospital once or twice a year for iv treatment and do my best to stay fit or I will just keep falling ill" Some people usually stop asking questions but others say "oh is that all it does" Again hard to explain But there is no answer than "If it gets really bad I could die and im not expected to live much past my 40s if im lucky anyway"
That usually stops anymore questions and people apologise for asking.
I dont mind people asking at all infact the more people know the better
A) Because they know that I have something and if I fall ill they know the reason why sort of
B) It opens peoples eyes to something they never knew about and some people dont know it exists.
What frustrates me actually how hard it is to explain it in detail because its just so hard for someone that doesnt know to understand what im saying to compute what it is (Computer says No)
How do you explain a deadly and painful illness to someone and expect them to understand? Its tricky and hard to explain that to someone who doesnt get involved with it.
Ive worked for people that just dont understand and actually think its an excuse and when people think like that its hard to work for them, hard to build trust and actually harder to maintain a good standard of health because you become afraid to tell work you need time off as your not very well so you push yourself at work to try and gain trust and then you end up pushing yourself so bad you actually become more ill and need more time off and that in turn then makes you look bad to people that dont understand. Thats a very big frustration and im sure many of people experience it.
Do you know one company actually accused me of skiving because i had time off work as I was ill? Its hard to believe isnt it but it does happen. I knew from then I was destined to leave there very soon. Which of course I did.
Another company used to say to me you may need to use holiday time to cover extra sick days past your company agreement.
Can I just say not all companies are like that its a small minority luckily
Ive read many stories of people being treated badly at work because their boss doesnt understand.
I should now mention that the company im with are the best ive ever worked for very understanding and couldnt do more for me and on top of that one of my bosses sons has cf and so its very easy to explain things when you have someone around you that completely understands what your going through it lifts so much weight off your shoulders. I really cant thank them enough for whats theyve done for me.
The other frustrating part is Gp's They are of course helpful but dont always know much about your condition so it sometimes strikes me by surprise when they see some of the dosages of tablets that you require to keep your health up. Its not their fault they just dont know but frustrating when your trying to say but I need these tablets quickly otherwise I will get ill, they have to follow the rules.
Its a comfort when you go to your regular doctor and when they trust you they simply say how you feeling what do you need and how long do you think you need it for
My doctor and cf team always say "We listen to you because only you know what your body is doing and how it feels? If only everyday average people could be that open minded things would be so easy.
But life isnt about ease, its about learning, failure, learning to succeed and jumping any hurdles that come your way. It frustrates me how hard life is but I be honest I would be bored if life is simple and thats why I secretly like the life I live because I enjoy complexicity
Life would be boring if we didnt have puzzles to put back together and find the missing pieces
Cf is a world of frustration, of roundabouts and explanations, of stress and constant whys, hows and this is.
It just another part of the mental side of cf that im sure I like many others have to explain deal with and carry on like its all we know. And that is probably the most frustrating thing about cf the frustration it causes.
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