Land of the Undiagnosed

Living in the land of undiagnosed is not a glamorous lifestyle by any stretch of the imagination. If the land of undiagnosed were a physical place it would be a gigantic swamp with some quicksand mixed in. Around it would be surrounded by sunny skies and beautiful rolling hills. But you have to pass through the swamp to get there first. In school one of my professors mentioned that it is a 50/50 thing whether having a diagnosis helps someone emotionally. I fully believe it does. When you are living with enormous amounts of uncertainty and have no freaking clue where your illness is taking you or what it even is called, it begins to wear on you. You sit there staring at your multiple pill bottles crying because it is a lot to handle and all of this isn’t even working for a concrete illness. It is hard to sit there and remember that in the next day you are starting to make the next step on the journey to figuring out a diagnosis. But at the same time being resistant to that process because you cannot stand the idea of a diagnosis that is going to pull me away from becoming a PT.

Right now it feels like a lot of life is upside down. A lot of diagnoses are changing, my symptoms are changing, and in school it is the time of year to start choosing which clinical sites we want for our 6 month clinical. It is hard to be in this phase of life where literally everything comes with a degree of uncertainty. And school never in a million years will slow down to give you a minute to rest and take a break because that isn’t how it is supposed to go. We are all supposed to push non-stop, but there comes a point where you push too hard. And with grad school that point is easy to get to, more so with a chronic illness. I am so frustrated and scared because I just want to have answers and know what I can do to feel better instead of feeling helpless. Feeling helpless sucks and is such a hard feeling.  The feeling of not having control over your health in some ways, which in turn takes away some control from life, and you just want control. So you do what you can to feel like you are in control in some way even though you really aren’t. It is a hard thing to deal with and it isn’t a journey for everyone. And while everyone who is struggling right now I believe is stronger than the average individual, it is because of necessity and not because of some magic skills we possess to be stronger than the average person. Dealing with being undiagnosed and with the uncertainty of chronic illness causes a toughness unique to the situation because you can’t just stop functioning. And so you just keep pushing because it is the only thing you can do. And you fight until you get out of the land of undiagnosed.


The Importance of Taking a Break

I am the first to push through and not stop for my chronic illnesses. Like yes I complain and get sad, but no matter what, I never give up pushing in school and in life to live to my potential. I always thought this was the best thing to do. Because you can’t let your illness win. Because giving anything less than what your healthy classmates can do means you aren’t doing as well. Trust me, I have felt my fair share of guilt, even when doing totally fine. I have just finished up my 11th month of PT school. I have had this mindset the whole time. Whenever I meet with my adviser to give her an update because I prefer to keep her in the loop to some extent, she asks if there is anything she can do. (Which is something I completely support – having support at school is essential for success.) I always tell her no for exactly the reasons mentioned above. I don’t want special treatment or anything extra that might just shine a light to the fact that I am different. That is until this past week.

This past week, the year of pushing through everything finally hit. I’m surprised it took this long. I personally felt like a zombie at the end of the week and can only imagine how I looked. It was a combo of pushing too hard in school, not listening to my body, and dealing with the realization that I am out of treatments for my GP currently. It was the perfect storm that led to a mess of a week. It sucks to admit, but it happened. There was a lot of friend support and pushing me through and a lot of crying. I ended up leaving school early Friday because I reached a point where I had nothing left to give. If I had stayed I would only be making everything worse and not retain a single thing. My adviser agreed and supported my decision to leave that day. It was hard. I have never missed class for anything but an appointment. I never wanted to miss class because that in my head meant the disease wins. But this weekend I have come to the realization that taking a break is sometimes the best thing you can do. I need to take more time for myself and realize when things are heading south and I need to step away. You know, before I actually hit rock bottom. It is hard but important to remember that there are more bumps in the road for me. More feeling sick. More emotions. This just means I need to listen to what my body is saying and take a step back when necessary as to not completely burn out. There is too much focus on blending in as if you were healthy, that ultimately that amount of time faking will finally end. There needs to be support and someone willing to tell you to take a step back, even when you don’t want to. It is worth it in the end to do what is best for YOU. Not what is best for your grades or reputation but what is best for your own sanity. At the end of the day you are the only one to stop you from going crazy.


The Chronic Illness Village

I firmly believe that it takes a village to get through life with a chronic illness. You need people to help you through the worst, to share the best moments with, to get opinions from when needed, and to help give life more normalcy. My life isn’t close to normal right now. I’m in a unique situation with school, I have gastroparesis, and a lot of other things too. Some days like this past week it took a village and a half to get me through. Making decisions is one of the hardest parts of my life with gastroparesis. Medication choices come with a laundry list of scary side effects that you never want to really think about. But I am at a point where I want a treatment because I am sick and tired of feeling like this everyday. Plus I just finished a 3 month round of pantoprazole in an effort to get rid of my gastritis and ulcer. So this is prime time. However, added bonus is being a side effect magnet, especially those neurological side effects like lightheadedness. So that puts Reglan out of the running immediately. Botox isn’t covered by my new insurance even it is the ideal treatment after a successful administration in June. So we are left with pesky old Erythromycin. Now I would be fine with this, except there is a little warning about long qt syndrome that jacks up my anxiety a lot. So here is where my village comes in. They helped me maintain normalcy and reminded me of other things, keeping me distracted enough to not worry about it until I had a chance to talk with my doctors. At which point I had an EKG and found out I was in the best spot to be starting and that I would get repeat EKGs. My medical team is full of caring superstars.

Beyond that I go to school with a group of 118 other people. 59 are in my class and 59 in the year above. We all rock grad school together and help each other get through. This group of 118 has helped me get through these first 8 months of the program. They provide joy, share the same goals (which is huge), help motivate me to be better, and give a space in which to vent. It is a definitely a team effort at points. I am also super lucky because some of the second years who we don’t interact with as much, have seen me at my worst and have helped remind me that I will get through. This happened on Thursday when I had abdominal pain that was my first symptom of my ulcer/gastritis and hadn’t felt since before the diagnosis of those 2. I was waiting for a review session to start when the pain hit and all of a sudden my emotions flooded and I went into a panic and was a minute away from bawling. A second year came up and asked how I was and my voice started to crack and she talked with me for a minute, calming me down enough to get through that review. Without her, I would have cried for over an hour likely. It is people like that who are in my village that make this whole thing just the tiniest bit easier. They are my flickering candle and sunlight when everything else seems dark. This is why I share my struggles, because I could never in a 1000 years get through this alone.