“Don’t let your illness define who you are”

Considering my previous operations, recovery from the cryoablation has been quite easy. I’m used to extreme amounts of nerve pain and throbbing aches and knife-stabbing pains during recovery, but this pain I’m experiencing is much different and more bearable. I get some nerve pain here and there with the majority of the pain being a sore, bruising type of pain. I find describing pain quite hard to do but there are just so many different types and it is important to describe them fully. The type of pain that has been the most difficult this time is the emotional pain. After the first few operations, the emotional pain was almost equal to the physical pain. It gets easier to handle after each operation but I know that it’s still there and present every single day.

What’s interesting to think about is that living with FAVA is different for everyone. Every single case is so different and what might be a treatment option for some isn’t for others. Even if they are an option, sometimes they don’t work for people and there’s no way in knowing if it will work or not unless you try. For some people, FAVA is treated only once and then it can be out of their life forever. For others such as myself, the chronic nature to it can be quite overbearing and sometimes it seems like the illness defines who we are by the actions that need to be taken. Now I am a firm believer in saying that your illness does NOT define who you are and that everyone has their own unique and brilliant traits and talents that may “define” who they really are. But sometimes I feel like this statement is easier said than done.

I believe that society expects you to jump back into reality fast after an operation. There are definitely advantages to these expectations but with chronic illnesses, it can be more of a burden in my opinion. Taking recovery slow can help your body physically and mentally. Having an illness so chronic in nature like FAVA, I find it so difficult to jump back into life after an operation like how I left it. Physically your body can’t handle what it could handle before and I feel like it is the same way mentally. Friends and family may want you to jump back into life but it isn’t that easy. Sometimes in order to recover you had to make some sacrifices. These sacrifices may be small or large but the action of having to take them for your own health and well-being may seem like your illness is defining you.  

I’ve had to make multiple sacrifices the past year from two unexpected operations. I could go on and on about them all. However, the most painful sacrifice was that I had to take off a year of college. I had created a new life with new people and new hobbies in an entirely different state and that had to be deferred. I had to go back to my old life that I tried to get away from. I managed to accept it and realized it was ok the first semester because it was only a few months. When the summer came, I was in little to no pain so I took an online summer course at UNH to get back into the rhythm of school again. I got so excited for fall semester to come to finally have my new life back. But, I barely finished that course because the last two weeks I instantly got extreme pain and found out I needed to have the cryoablation done. Emotionally I froze. It seemed like more false hope. I knew I had to defer another semester of school and that was the last thing I wanted to do. So although society expects you to jump back into your life, sometimes it isn’t practical or even possible. When you make sacrifices you don’t want to make, it can feel like your illness is making that decision for you; hence defining your actions. Think about how many times you have changed your life completely and how emotionally exhausting it was to find your own rhythm again. Now think about doing that over and over again.

So, do I let FAVA define who I am? There are moments that I look at my present situation and say yes. But then I always have to remind myself of everything I have already accomplished. Although my list might not be as long as I hoped, I’m learning to be ok with the way it is now and that over time I can accomplish what is missing. In the meantime, I am trying to find other hobbies and take advantage of the time I have to make other accomplishments despite my emotional pain. So although there are times that I feel like FAVA defines my life, I’m still learning that it doesn't. But it’s always easier said than done. 

-becca