Today I had a follow up appointment with a surgeon from ENT about my constant ear pain. He said my scans were clear and my hearing was good just a bit weaker on the affected side but it was all looking good. When he said that to me I went into complete meltdown because I couldn’t understand how he dared tell me I was okay when I am in so much pain. His response completely changed my outlook for what will be the rest of my life.
He said “I completely understand that you would be in pain and I have nothing to compare your pain to. It is exactly 3 years ago today that you were 2 weeks into treatment for bacterial meningitis and you are 2 weeks ago from being exactly 3 years ago that you were being treated for mastoiditis. That 3 years is long enough to say that medically there is no possible way for any of your current pain and issues to go heal any further than they have. You have spent this 3 years devoting all your time and efforts into getting rid of your pain and solving everything so that your body goes back to the way it was before but your body, your brain, your ear, hearing, sight, was all put through the biggest test and through 2 life threatening infections. If you keep pushing yourself like this you are going to spiral into drug addiction and severe depression trying to get rid of pain and problems that cannot get better from here. You need to stop trying to treat the pain and start working on learning strategies to cope with how your body functions and the lack of functions and starting working on managing the pain because I am telling you it probably won’t go away. But you can get better at dealing with it. I can help you to take preventative measures to avoid any sort of infection from spreading up into your brain because the first infection created that pathway because you will forever be more susceptible to dangerous infections and a cold to me is going to be worse to you, but my cold may be worse than the average persons but I can help you to work on ways to prevent getting a cold. You have spent the last 3 years of your life on hold until you get better but you need to start living your life and protecting yourself from getting worse.”
I know many people may read what he said and say doctors shouldn’t tell you to deal with pain and tell you they can’t do anything but if you like me have spent time being told you’re okay even though you aren’t and being told it will go away and spent time waiting for it to all heal and go back to what was, then having him tell me this is the best thing for me because I don’t have pressure on myself to expect to go back to my old normal because I know this is my new normal.
So here’s to accepting what is and having people that are willing to help you to cope with that