New Year, Same Journey

I’m now at the end of a year long challenge to accept my life with chronic illnesses. But just because that year is over and I will move on to new goals in 2019 does not mean that my journey of acceptance is finished. My illnesses are constantly evolving and, in turn, the way that they affect my life will always be changing. Although I am in a much better place now to process my emotions, I do still struggle with it at times. It can be hard to watch others my age doing the things that I want to do, whilst I sit in bed at home.

It has gotten to the point where my friends no longer invite me to things because I was always too ill to go in the past. At my age, almost all of the things that people want to do involve heavy drinking, using a lot of energy, or doing a lot of walking around. These are three things that I avoid because of my illnesses. Everything I do has to be carefully planned and must be done in moderation. And these kind of restrictions don’t suit young adults who want to go out partying or shopping or even to do things like bowling or going to the arcade. And on the rare occasions when I can arrange to do something with my friends such as going to dinner, I often have to cancel because I am too ill on the day. This has left me with a very small amount of friends, most of whom I do not get to see often. Some of them do offer to just come round to my house and hang out, but I don’t like people seeing me when I am ill. For years I have kept up the charade of a happy and healthy young woman, and I avoid letting people see behind that mask.

There are periods when my health is a bit better and I forget how hard it is to be bed-ridden. It sounds great, never having to leave your room, but staring at the same four walls can literally drive you crazy. Doing this to try and help my physical health will always take its toll on my mental health; it is like a vicious, never-ending cycle. I will have a couple of days when I am able to do things, and then my illnesses hit me again and I am reminded of why my life felt pointless. It might seem to onlookers as if I am handling my illnesses well, but my journey of acceptance will always be going on behind the scenes. 

So maybe I have got to the stage where I can say to myself “It’s okay that you can’t go out today, we will try again tomorrow” and maybe this should be easy for me since I have done it so many times before, but you never get used to the feeling of defeat, of hopelessness, that comes with that decision. And maybe I have learned that my future will not be exactly what I had expected it to be, but that it can still be my own, but that won’t stop me feeling disappointed when I see someone else living the life I had dreamed of for myself. The battle to accept my life with chronic illnesses is one that I will be fighting my entire life. And every time I think I’ve learned how to deal with this something changes, even slightly, and I am back to square one. It might be a difficult battle and, at times, it might seem impossible to keep fighting, but I know that if I keep going I will survive. I will live.