When Illness Defines Who You Are

“The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out.”

-Dr. Paul Kalanithi

A few weeks ago I shadowed a doctor and he had suggested I read When Breath Becomes Air by Dr. Paul Kalanithi. As I was reading this book, it made me think about a lot of different things, and one major thing it made me consider, was that life is very short. Dr. Kalanithi put his entire life into academics and becoming a neurosurgeon, only to die of cancer after his daughter was born and he became a full-fledged attending. Dr. Kalanithi was an amazing role model that lived a successful and fulfilled life in a short period of time. As someone with a chronic illness, it is easy to define yourself as the illness. It is easy to say “no I am to tired to get out of bed today” or “I have POTS I can’t do that” but the real question is: why can’t you do that? Can you not do something because of the illness preventing you or because you have given in to the symptoms?

            Having a chronic illness is not always synonymous as having a terminal illness. It is so easy to define one’s self as an illness or as the symptoms. I find myself saying I am always tired or I am too weak or I am too dizzy. I am defining myself as these symptoms; I may be feeling like this, and I may be all these symptoms, but fatigue, dizziness, and weakness are not my only characteristics. I am smart, I am a student, I am a daughter, a sister, an aunt, and a friend; I am a lot of things. I am not only the POTS patient. For the past two years I have defined myself as the sick girl, but if I see myself as the sick girl how does everyone else see me? I do not want the world to see me as the sick girl, I want the world to see me as a strong, independent woman who has huge goals and plans to achieve those goals. By defining myself as the “sick girl”, I am becoming my symptoms, and allowing others to see me as the sick girl.

            Being sick is a vicious cycle, but what I have learned is cycles can be broken. By having a chronic illness, it is extremely easy to get caught up in the cycle of fatigue, doctors’ appointments, diagnostic testing, and so on, but there can be an end to this cycle if you say so. Yes, you still have to get tested and go to the doctors, but that doesn’t have to be your whole life. You can still pick up a book and read, you can still hang out with friends; you can still be a viable person. I have let POTS dictate my life and who I want to be as a person, but it is time to take control again. I read different POTS Facebook groups and I see how so many other people get caught up in the cycle of symptoms, (and I am not belittling the symptoms because I 100% understand how hard it is to live a normal life with them), but I sometimes pity these people because they do not see the silver lining. They do not see how life creates unwanted obstacles and if you just go slow, and keep steady, you will get over these bumps in the road. The thing is you need to be stronger than the symptoms; you need to take baby steps in taking control of your life again. I read all these negative posts and I remember when I first got sick and how everyone thought I was faking, but I stood up for myself. I found my inner strength and demanded to find an answer and not let these horrendous symptoms define me. I continued going to school, I ignored the negativity from family, friends, doctors, and professors, and attempted to lead a relatively normal life. I sometimes think, what would have happened if I listened to all that negativity to quit and I gave in? Would I be worse? Would I have more nerve damage? Would I be depressed? Would I still be a pre-med student?

            The past two years I have found that I have been full of anger and regret. I am constantly thinking: what if I chose another school to go to instead of Fordham; would I have gotten sick? Why did this happen to me and not someone else? These questions have ruminated in my head for the past two years and I have realized that contemplating is not the answer to continuing to live. All this has done is create a large wall between me and everyone else. I have isolated myself. I have pushed people away, afraid of what they will think of me if I pass out, or if my feet turn purple, or another symptom arises. I can blame the POTS for forcing me to isolate myself, but I now know it was my internal negativity that has created this in response to POTS. From now on I will not let POTS consume me because there is nothing I can do about it. I can only accept it. I can continue to complain about how miserable my life is because I cannot have a true college experience, but in reality it can be significantly worse. I have family and friends that love me, I am getting an education, I can walk, breathe, read, freely speak my mind, and so much more that many people in this world cannot do. Yes, it is miserable to have to live with life altering symptoms every day, but it is not the end of the world, in fact, it is far from it. By redefining who I am, I am becoming a stronger and more intelligent person. People can continue to belittle my symptoms and my hardships and that is fine, because I will not let it affect me. I am paving a future where POTS is a microscopic characteristic, and people will see me beyond this disease.

            From this whole experience I do not only have a new outlook on life, but also I have a new outlook on myself. I see how strong I actually am. I have fought through my symptoms and I will continue to fight for the life I want. Many people ask why I want to be a doctor and assume it is for the status or the money, but really I want to be a doctor to make a difference in someone else's life. People work towards jobs to make a living and coast through life, but I want to challenge myself with a meaningful job. I want to be able to go to sleep at night and know I made a difference in someone else’s life. When I got sick, I didn’t think I would be able to achieve my dream and for a few months I gave up and decided I would go into architecture or in finance. I tried picturing my future as an architect or financial advisor, and I saw nothing. I saw a bleak life. Last summer, my mom asked me why I gave up on being a doctor, especially since I wanted to be a doctor since I was very young and that's when I realized that I had no legitimate reason. My only reason was because I have POTS. At that moment I knew I was giving up on life and just letting POTS consume everything. Taking that first step, deciding that I do want to be a doctor, was just the beginning of chipping away at this shield I created for myself. I was blocking my dreams and the world with this shield and using POTS to rationalize it.

            Life goes on, with or without you, and shadowing a doctor in a hospital for a week shows how quickly life passes by. People die every day from a variety of different causes. POTS may be chronic and a nuisance, but it is not terminal. It can be easily made terminal if you give in to the symptoms and allow yourself to stop living. For the past two years I pushed myself to get better, but I also let life pass right by. There are ways to manage symptoms and continue to live a full and successful life. By complaining and letting life pass right by you, you are creating a terminal illness for yourself. The one great thing that did come out of having a chronic illness is the drive and determination that it has instilled in me. I am not letting POTS be a large portion of my character anymore. I refuse to be afraid anymore; afraid of getting sick, afraid of a bad relapse, afraid what people will think. POTS has given me a new outlook on life and has made me stronger.