Yesterday I was sent a message with a transcript of part of a speech from a recent Usher conference. Part of the speech touched upon how a person is told they have a retinal disease, a disease which is going to leave them blind. It threw up a bit of a debate as the speaker suggested that the effects of the diagnosis can be likened to PTSD (post-traumatic stress disorder), as some sufferers experience feelings similar to symptoms of PTSD. However, another friend cautioned against using this term as they are worried that this is yet another “label” that is being placed upon us. With us trying so hard to be seen as normal, is this really helpful to us, having another label being placed upon us? She is right, we do not need another label. But there are parts of that speech that I really do agree on and it cannot be ignored. That whole how we are told, “oh, you’re going blind”, and that’s it. Goodbye. No reassurance, no follow up support or care is provided, or counselling, or even names of agencies to be referred to. And from my own experience it’s pretty horrible. Really, really horrible. Your life changes in a click of a finger and you’re expected to just….. I don’t know really, what do they expect?
For me the panic attacks, sleepless nights, depression, loneliness, anger, etc, I could go on, continued for a long time afterwards for me, and some days I’m right back there again to where it all started. Thankfully for me, four years on, these episodes are getting rarer. These are some of the symptoms of PSTD but yet I don’t feel comfortable using this term. It was also pointed out to me that it’s open to misinterpretation and it could be misunderstood. It could be misunderstood that the symptoms are part of having Usher Syndrome which is not the case. So in my opinion, while PTSD is not a label we want or need, what still has to be recognised is the effects of receiving the diagnosis has on us. It’s the effects of being told quite badly that your life is about to get sh***y. While I would never compare with what others are going through, we all have our own battles, but a lot of others do get support and help after their diagnosis/experience. For example, if you lose a limb due to an accident, after a stay in hospital you get referred to rehab and counselling, etc. There is a care and plan put in place for that person from the very start. But not for many of those losing their sight. That is what is missing here. It has to be recognised and it’s crucial that this is changed. And even though it wouldn’t change how traumatic receiving the news is, it would help lessen the severity of the impact and the long term effects of it. So whether or not we agree if we should use the term PTSD, I think we can agree that some recognition is needed in order for changes to start happening.