If you’re in a position similar to me, where your symptoms are so obscure and test results so inconclusive that you’re stuck in a frustrating limbo, you can begin to think that you might be an annoyance to the doctors that you visit.
They know that they do not currently have the answer and have run out of tests which may be useful in narrowing down the possibilities. They begin to suggest things like “seeing your GP for psychological help to deal with the uncertainty”, which angers you because you would rather deal with the root cause.
They appear optimistic without reason, suggesting that one day you may wake up with your vision restored and all of your symptoms will miraculously disappear; you know this is very unlikely.
They suggest that you “try not to think about it”; you know this is impossible when it impairs your every day life and parts of your visual field is obstructed by shimmery blind spots 24/7. (Imagine having a piece of dirt or a fly stuck to your glasses and not being able to wipe it off.)
They ask what you think the problem is. This angers you because you know from past experience that they tend to shoot down any ideas you suggest, saying it is very unlikely. But in fact, it is likely that whatever you have is very unlikely!
New doctors that you see don’t read your notes properly and say all of the problems are caused by anxiety or depression. Clearly not.
I have nothing against doctors at all. I have very rarely encountered a doctor that didn’t want to listen. It is just difficult seeing doctor after doctor when they don’t really understand how you feel and cannot to anything to help. Also, having to hold back the frustration so that they don’t mind seeing you again.
More specifically for young people, it affects all aspects of your thoughts about the future. You want to imagine being old and retired, playing with your grandchildren, gardening… (and I don’t even flipping like gardening!) but in reality you don’t know if all these things are possible because even right now these things would often be difficult, in your mid-twenties, with the symptoms you’re having and you don’t know what is causing it.
You worry about finding a partner who won’t be put off by your medical problems and, although it is easy to sit at your laptop and chat with people on dating sites at times when you’re feeling tired or unwell, it is less easy to get out there and meet people.
After writing all of these thoughts down, I can see why a doctor may suggest psychological help! But in fact, it is not depression preventing me live a normal life, but physical symptoms. Inside my mind I want to run about and keep busy like I used to, but I know if I do this then it will ruin the rest of the day so it is often best to save energy. So instead I sit here and write this…