Three posts in one day, I am on a mission! This one is different though, this one will hopefully help others to come to terms with their diagnosis whatever it may be....lupus, fibro, CFS, MS.....we are all the same at the end of the day.
If you have got to the point if diagnosis then you will, most likely, have been feeling the effects of your illness for some time! It took me ten years to feel like I was being heard, but for some it may be shorter or longer. The fact if the matter is it doesn't matter how long it's been, getting a diagnosis is still a hard time!
What are you hearing?
This is the most confusing time of all for you and those that love you. It will either go one of two ways (remember this is just my experience). You will either get the answer you need from someone that you feel has listened, or you will get an answer from someone that you don't feel has listened.
I went for years feeling like I was losing my mind. Being told I had one thing and then going back and forth to my doctor with what appeared to be random symptoms. I was told I had scarlet fever, M.E, fibromyalgia, none of which explained my symptoms completly. I was frustrated at the doctors and angry at myself for not saying "this is what is going on".
So when I did get diagnosed I thought that would be the end of it. How wrong was I!
Diagnosis brings up new questions, how long will it last, new tests for things is never heard of and a whole lot of stress that made the illness worse. Of course there was Google but I would never advise that to anyone.
In short when you do get diagnosed ask questions. How will this affect you in the long run? How is it treated? What can I expect? Most of all have someone with you who can listen to everything when your mind goes blank.
Expect a lot more tests...
You have the answer.....great! Remember though this is just the beginning of a road that you are meant to walk. I have blood tests now almost every other week, I have kidney function tests all the time if seems and X-rays etc!
This is when the doctors are trying to figure out the best plan of attack for you. It may be medication lead or it may be occupational therapy lead, either way it is terrifying and opens new doors.
Never feel ashamed, scared or alone
One thing being diagnosed taught me is that there are so many people out there who have the same battle that I can push through it!
Look at where you are, where you have come from and what you have already faced when you didn't know what was wrong. Yes, having a diagnosis of a chronic illness is scary but it doesn't mean that you have to change the fundamentals of who you are! I'm still me....maybe a different version but still the same hippie, tree hugging, surf loving girl I always was!
Be yourself and let in the diagnosis....that's the only way to face it!!
