Appreciate what you have!

Today I finally handed in the report I've been working on for the last 3 months.

I graduated from uni this summer and got myself a freelance job at a charity I had interned with in the past. They hired me to conduct research into families who have a child or children affected by undiagnosed conditions. I basically had to design, administer and analyse a questionnaire, conduct interviews and collate all this data, analyse it and write a report with notes and recommendations. 149 questionnaires, 15 interviews, 17 161 words later, I must admit I'm glad it's done now...

But the reason I wanted to blog about this is because doing this research and speaking to these families really made me appreciate certain things again. My Cushing's ordeal has been very difficult but it hardly compares to the hardship that some families face. Getting a diagnosis is tough to handle, but not getting one? Well that's sometimes worse.

Anyone with any experience of Cushing's or other diseases which remain undiagnosed for a long time can relate to the frustration you feel when you KNOW there's something wrong with you but they just can't figure out what. These families spend years searching for a diagnosis for their child/children, experiencing isolation and social stigma, and not receiving the help and support they are entitled to.

I realised I might have Cushing's by doing an online search of all the symptoms I was experiencing. And once I'd pushed to get tested and they confirmed I had it, I was glad I could read up everything about it. Now imagine having symptoms but never getting an answer!? There are thousands of families here in the UK who have children affected by learning difficulties or physical/health problems or both, and who just can't get a unifying diagnosis. I'm sure some of you are thinking, well what's wrong with that? Surely just having a name for what's wrong with you doesn't make a difference? Well believe me it does!

So many parents struggle because they don't know how to deal with the symptoms. If you focus on one does it make the other worse? But the worst part of it is the unpredictability! Of course disease progression always differs, but when we know about a disease we can usual have a prognosis. I'm hoping that once the tumour on my pituitary is removed, my hormones will start regulating themselves again etc. But these families have no idea how their child is going to evolve! Will they get worse? Will they get better? Is this something which will kill them by the time they reach 20? So many questions....

Anyway, the point of this post wasn't to be all doom and gloom or bleeding heart, but it was to acknowledge other people's struggles and perhaps make you appreciate what you have! I know it made me thankful for what I have...