Last week I was contacted by a young woman asking for some advice about approaching the subject of an ME/CFS diagnosis with her doctor. She’d been feeling rubbish for 4 years since having glandular fever and her symptoms were getting worse. Her health has affected her university grade and she feels misunderstood by her family. She also asked what she could do to take control over the situation while she waited for a diagnosis. Here’s an edited version of my response:
I’m sorry that you find yourself in the unfortunate position that you suspect that you have ME/CFS. First of all let me say that I am sure that you are not being lazy and you must trust your own experience of your body no matter what those around you might think! Until we’ve had experience of something like this it’s almost impossible to understand, so other people will often try to explain it in the only way they know how. They don’t usually mean to be unkind; they just don’t know how it could be any other way.
Unfortunately without a diagnosis it’s difficult to convince others because sometimes we have our own doubts. It’s important that you stay clear with yourself that you did a great job getting through university overcoming the challenges that you were dealing with. It doesn’t matter whether or not you have a diagnosis yet, you know that you were struggling with health problems and that you did the best that you could, given the circumstances. If you can stay strong believing yourself, it will be easier for you to help your family understand when they are ready to. I believe in you! I’m sorry you didn’t get the grade you could have if you were well, but what’s important now is that you focus on dealing with how things can move forward and get better.
Approaching a doctor about the possibility of ME/CFS can be a scary prospect. I always think it’s helpful to prepare for a doctor’s appointment with an idea of what you want to get from it. It sounds like what you really need is to get a diagnosis. ME/CFS will only be diagnosed after many other condition can be excluded which involves a variety of tests, so it could take some time. What I suggest is that you write down everything you can think of about how the illness has affected you since your glandular fever. What were you able to do before it? How have your symptoms developed since it? Try to draw a time line, and include any other things that were going on in your life, especially things that could impact on your health. Be clear with the doctor just how much your health problems are getting in the way of you living life now. If your doctor wants to do more tests ask him/her to explain what they are doing them for. Express your concern about ME/CFS and explain how frustrating it is knowing something is wrong but not knowing what it is or how to deal with it. You could also ask if there any specialist services in your areas that could help with a diagnosis. But be careful to give your doctor a chance to do their job. It’s a good idea to make notes about the things you want to tell the doctor so that if you get tired or anxious during the appointment you can refer to them to make sure you don’t forget anything. Wishing you the best of luck!
Finally, the most important thing that you can do for yourself whilst you wait for a diagnosis is rest up and take it easy. If you do have ME/CFS (which sounds like it could be a strong possibility although you must bear in mind that I’m not a doctor and am not qualified to diagnose) the most important way of managing it is to keep within your energy limitations. This can be difficult and frustrating because they can change from day to day. Not only do you have to learn how to deal with having less energy you also need to pay close attention to your symptoms and notice when you might be having a good or a bad day and make sure you do even less on a bad day! One really helpful tip I was given by a doctor early in my illness was to do everything at 50% effort. These are some of the posts I’ve already written that might be helpful at this stage.
I hope this has been helpful and I wish you the best of luck with your doctor’s appointment! I’ve written many posts about many different aspects of dealing with this condition which I hope will be helpful if you find you need them! If you have any more specific questions please let me know.