After Diagnosis

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So I decided it would be a good idea to blog about my experiences with CFS/ME and uni as it can be a very difficult time even if you don't have a disability. There isn't that much advice for students dealing with these sorts of conditions and I'm not sure if that's due to ignorance or there just not being a lot of information out there. But here are the 5 things you will probably encounter before and after being diagnosed. 


So what, I get tired too?
Ignorance is one of the biggest barriers you will face when you have a condition/disability. When you've been recently diagnosed and you are dealing with the limitations it means for you, the last thing you need is people belittling or patronising you and your illness. Some people will try to understand and I am grateful for anyone trying to help but others will assume that because they can't see it, it doesn't exist. The amount of people who will say that I'm just lazy; not trying hard enough; boring or anti social just because I have to have a sleep routine to help me get better. These people are not worth worrying about. They will not be loyal and great friends and you do not need to stress about keeping them happy whilst you are dealing with your new life. 

But you were fine yesterday?
As with everything in life, you will experience good days and bad days. Being able to go shopping one day, but not the next does not make you a bad person. With CFS/ME you might not have done much the day before and so make plans but the day after you are in pain and can barely walk. Guilt is a massive thing to deal with but you cannot tell how you will be on a day to day basis. Also, to others going to the shops or watching a film does not take a lot of energy but to someone with this condition it is a big deal and you have to plan out what to spend your energy on. 

Well, we just need to refer you...
When I got my diagnosis I thought that it would mean doctors and nurses would instantly help me and I would get the medicine and support I needed easily. However, if you move to a different practice because of uni or work they seem to not really know what to do. I have been told to go for re-diagnosis, to go for more tests and even another referral. Now I'm all for getting another opinion (I wouldn't have got my diagnosis without trying other doctors) but once you've been through the system once it's soul destroying when someone says you have to do it again. Somewhat because of the hassle and stress of appointments and retelling everything but mostly because you know the referral will take 3 months at least and then the tests might be another couple of months and so it's half a year before you've actually gotten anywhere. My advice is to not lose heart and to go back to who ever diagnosed you and get them to email or become a temporary patient back home and try there. 

So you're just giving up?
This might be the hardest of them all, putting your dreams aside. You are not giving up on your dreams. You are putting it on pause in order to get better or be realistic. This is something I'm still dealing with and I don't think that will change. Now that I have to put my health first I know I can't be an actress or work in a job I love full time, I know I have to play it safe and not go on big nights out, but that doesn't mean I am giving up on them. People change every day and the things you want will change too. Being realistic might suck at the time but you might actually enjoy this new path or( if it helps you get better ) go back to your dream at a later date. As my mum says, try not to hurry things and be so hard on yourself, it will get better.


We've got your back
Through all this stress and frustration, it's important to remember that you are not alone. At times this is really difficult, even impossible, but there are family and friends; support groups; charities; nurses and doctors and disablility services who have your back. Sometimes all you need to do is ask and someone will hold out a hand. 

Take care
x


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About Me

"For God so loved the world that he gave his only son, that whosoever believes in him shall not perish but have eternal life" Hi! I'm a 21 year old student, and this blog is here to document my thoughts, feelings and events that happen in my life. I hope you'll enjoy reading them and get some comfort from knowing that you're not alone. So sit back, grab a cup of decaf tea and join me on this journey we call life.

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