COULD YOU HANDLE BEING ME?

Yesterday I came across the following meme: " You couldn't handle me even if I came with instructions". It stopped me in my tracks because it sums up my life perfectly.

Yesterday was Rare Diseases Day, a day world wide to specifically advocate for thousands of rare diseases. Cowden's syndrome ( which both my daughter and I have) is a rare disease and affects 1 in 200 000.

My condition is a chronic condition. It requires vigilance, constant intervention and frequent testing. It means you become a slave to a diary of appointments and become quite used to having to change both work and social life to accommodate the diary and the doctors. In my situation it means a lot of travel, as I live 460km from the capital city where the best of medical attention is available.

On the road again

A rare disease puts you under the scrutiny of others and not always in a good way. At the moment a tradesman is working in my house. He asked me why I wasn't at work today. Everyone asks me that. How do you explain the difficulty in holding down a job with regular hours, when you are in and out of hospital? How do you explain the embarrassment of asking for time off " yet again"? How do you explain that your body is slowly failing you and that sometimes standing on your feet and socializing with others for a whole day, is a massive strain? Generally people who only have to worry about colds and the odd flu just don't get it!

What everyone also doesn't get is having to advocate for yourself and in my case for my daughter as well. I've written about this before. Doctors can't be expected to know about every rare disease going. Some are quite OK about saying that and seek out information from the patient, who is usually a great source of information. Others take offence if you claim to know something they don't and this often leads to conflict and the attitude that " if I don't know about it, it probably isn't important.Yes it is. It's about me.

Another aspect of having a rare disease that many don't get, is the closeness you feel to people with the same condition you have. In most cases you are unlikely to ever meet these people and yet they become so important to you. Why? Because they get it, and they get you, in a way that others never will. And they provide support in a way that others never will, because they know. I remember years ago having an ovarian cancer scare and someone hearing that I was in a situation, came out with " oh what now!".  Yes, it was said in a tone which implied that I could possibly be making stuff up to get time off work. No empathy and no sympathy and soul destroying when your world is caving in. You don't get that from another " rare" person.

There was a great article doing the rounds yesterday. It questioned people who think Rare Diseases Day doesn't apply to them. It says quite eloquently that if you are or might one day be a parent or grandparent, if you work in a school or health care and if you simply have friends, then the day IS relevant to you. In the states, 1 in 10 Americans has a rare disease.

So, please take an interest because you never know what's round the corner. Support people living with a rare disease by listening and educating yourself on their conditions. If you are able to, attend fundraisers as there is much need for research in all conditions. Above all, thank God for your own health and never take it for granted.

Till next time...xxx

" WE LOVE RARE"

ST