Personal Recovery, Part 1: Doctors and Denial

A big blue sign says Massachusetts Eye and Ear Infirmary and a hand holding a white cane shows in front of it.

Except for cataracts and some other surgeries, there is little permanent improvement available for most modern eye diseases. Treatments cannot usually reverse symptoms; they only slow down losses. This is hard to believe, because modern medical achievements are so miraculous in many areas. But there is lots of eye research going on, and it is very important to have regular checkups with your eye doctor to ensure you are hearing about potential new treatments.

The trauma of finding that you have lost a whole lot of sight, or have been diagnosed with a blinding eye disease is so great that you can become dependent on the words of one eye doctor. It is vital to find an ophthalmologist who is the very best specialist in your eye condition that you can possibly get to. It is also important to explore all the options for your eye condition. This will involve a second and even a third medical opinion, and searching the internet for information about your eye condition, as well as contacting associations of patients with the same condition who can direct you to good resources.

It can be tempting to stick with your old eye doctor or even primary care physician when vision loss hits you, because it seems too hard to find better options and even harder to manage the insurance company and get to a distant location. But it is so important to do the very best possible, so that in years to come you will have no regrets. You will not be beating yourself up not saying If only…

It is also very tempting to continue visiting the hospital, only searching for a medical solution. It keeps you feeling like a patient who may be cured! Ophthalmologist are trained to work inside your eyes in microscopic detail, and are rarely good at sitting down beside you to explain clearly what they can and cannot do. But gradually you will realize that the medical experts cannotgive you back your good eyesight. This can make you feel abandoned. You want new tests and treatments to keep you hoping that the life you have always lived will return. If there is nothing left to try you may begin to sink into denial, depression and anger. You may not want to return to the hospital ever again. But please get past this bitter disappointment for the sake of any remaining vision and the general health of your eyes.

Denial, anger,resentment, jealousy and depression

Odd though it seems, these ugly emotional states are a very important part of personal recovery, provided that you talk about them a lot. No one wants to feel or admit to these horrible emotions, and surely it will be better to stay busy and cheerful? The trouble is that if you do not unpack your grief, including most or all of these powerful emotions, you are likely to get stuck in your old identity. You will still think of yourself deep down as belonging to the sighted world. You will not be able to work on useful adaptations to your habits and your personality. These miserable states of mind need to be gone through with the help of old friends, your priest, minister or counsellor, and when you are ready, a psycho therapist experienced in people with serious disease or disability. Gradually you work your way through all the grief and despair, all the anger and resentment, doing as much as you can bear at one time, until you have found strength and trust in your altered but still familiar self.

Next Week: Part 2

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