When you have a chronic condition and are taken out of life for a while, it is incredibly difficult to come back from it. I use the term “taken out of life” to refer to someone being unexpectedly pulled out of school, work, had to miss out on social/family events, etc. I have had to come back into the real world more times than I even remember. From swimming, to school, to work, to relationships and friendships…I have been taken out of life and had to throw myself back in way too many times. The sting of disappointment you feel when you are finally settling back into the situation you were in prior to the event or illness that took you out of it to begin with, only to have no choice but to stop again is unbearable. It has been by far one of the worst things about this disease for me.
Since I had to take a leave of absence from high school and fluttered in and out of college for 5 ½ years, I feel like I have had to come back to myself so much. I would literally start a brand new semester two days after a tube was removed from my stomach at a post op appointment. I also have been involved in a lot of things, made new friends and started becoming really engrossed in the community that I was a part of, only to have a medical issue completely interrupt it…again. I feel like I have been on an emotional and physical rollercoaster since I was 13 years old. After I was diagnosed with pyoderma gangrenosum last November, everything I clung to when I made the decision to give in and have an ileostomy was gone. I completely shut down after that. I did what I had to do treatment wise but I stopped looking for work opportunities, stopped checking out graduate schools, and basically just became paralyzed to move forward in any way.
Now that my health has been more stable, I have been making progress. I have been volunteering, going out on my own more, and trying to make plans for the future. I am even upstate now all by myself for the first time ever. These things like being able to volunteer or stay alone at the age of 26 seem like no big deal. I know they sound absurd when I really think about it. But the reality is that it is not absurd or insignificant in any way in terms of my life. I have friends who have been going through a lot that have recently started working and/or going to school again and I find that they make the same remarks as I do about their achievements. When they talk about how they were able to work or attend school and what a huge amount of effort it took but then follow it up with “…and I know it isn’t that big of a deal,” it makes me realize that I have just a twisted view on this subject as they do. Because the fact is, it is a big deal. It is a big fricken deal to go from barely being able to leave the house or do anything to all of a sudden having a schedule and a set time and place to be. It is a huge adjustment in general to have commitments that you need to follow through with.
The emotional component of essentially starting over after a traumatic illness or some type of unexpected event is beyond difficult. There is always that looming question when you are living with a chronic illness which is “when will I get sick again?” I have been trying to silence the voice in my head that asks that question or downplays all of my achievements and to be honest, I am doing a very poor job. I am really going to make a huge effort to stop worrying about all of the things that might happen and I am going to make every attempt to be proud of my small achievements. I can’t promise that I won’t minimize my accomplishments again in my head or out loud. I can’t even say for sure that my mind can stop worrying about all of the things that could potentially happen because well, so many unexpended negative things have happened to me. However, the fact that I am acknowledging these feelings and attitudes is a step in the right direction. Every step matters regardless of how big or small it is. Every step is a step towards progress. Every move forward is a step in the right direction. We all need to realize that when you are taken out of life for so long, whether it is a result of illness, a family situation, or something else…getting back into life and the daily routine that “normal” people have takes time. It is important that we allow ourselves that time and praise ourselves when we accomplish something new; Regardless of whether or not it seems like a big deal to the rest of the world. I have needed my parents and friends to validate that the progress I have been making is significant. I haven’t mastered the whole patting myself on the back for finally being able to do things any 26 year old should but I am really trying to look at it in a different way.
The bottom line is that we are all in different stages of life, regardless of how old we are. Sometimes I feel like I am 80years old, and in some instances, I feel like I am 16 again. We all are progressing and evolving on our time frame based on the circumstances we have in our lives. Some of us have to overcome challenges, while others don’t really seem to have any obstacles standing in their way right now. Either way, improvements are improvements regardless of how big or small they are. We need to celebrate the baby steps and the things that don’t seem like a big deal to the rest of the world because they are something to be recognized. Whenever we do something different, something that was difficult for us to start and then follow through with, it is a huge deal. And when we overcome some of the things that have us freaking out deep down inside, we need to pat ourselves on the back. Achieving anything that was once a fear or something very challenging to do is an accomplishment in and of itself. Be proud of you. Try not to look for reasons why you aren’t measuring up to the person you think you should be. I seem to have done that a lot over the years and still to this day but I am just starting to realize how it is only detrimental to my emotional and physical well being.