Diagnostically Speaking

We’re in a difficult place with CFS, it’s so hard to describe what level of discomfort we feel and there is nothing to measure it, as there is no diagnostic test.  Doctors, family and friends can only rely on our own account. Almost all other other conditions have a test so when you go to see your consultant they judge how sick you are not only by listening but also by looking at your blood work or ECG or whichever test is appropriate to you. We unfortunately only have anecdotal evidence, so each time you speak to someone about how you are feeling it’s almost like being in a job interview. Have you given all the information you needed to, did you present it the right way, how did you come across, neurotic, depressed, as a hypochondriac or as the person you really are: sick and looking for relief and help from the person sitting across from you. I know I always over analyse what I’ve said, worry that I didn’t give the right picture of what I am actually going through day to day, wonder if they think it’s just a lot of words.  I consider carefully how best to give my evidence. I now talk in terms of percentage of function, or how long or far I am able to do things for. It helps to give something to measure against. But there is always a doubt in my mind if I’ve properly explained. 

It leaves us in a tricky position, open to miscommunication, friends and family always ask so what did the consultant say? How did he find you? And well there is never anything to report, my specialist never says how he thinks I am. He will adjust medication, he is a good listener and a believer that it is an organic disease, so I feel as if I have one ally within the medical world but he never says you’re at this stage of illness so we need to do this, for example. I can’t tell people the test results were the same, worse or better. It is up to me to tell people how I am feeling. So there is always a voice that asks do they believe me? Do they understand? Over the years I do think I’ve learnt to explain a little more clearly but it will be so much easier for us the day we have those diagnostic tests. We sufferers will then understand these often frightening symptoms and why we are experiencing them, doctors will be supportive as they will also feel more secure in their knowledge and capabilities, and family and friends will have a more normal way to discuss our affliction, as they are able with other illnesses. It will remove a whole other dimension of confusion and worry from this debilitating condition.