by Jordan Griffing

I had a wonderful childhood, but when I look back on it, I don’t always think of the family trips or the great adventures or the wonderful people who surrounded me. What I remember are the hospitals and doctors’ offices, the television shows and movies I watched when I couldn’t play outside, and the games my mom and I would make up to pass the time. I still vividly remember the day my mom came to pick me up from second grade while we were at recess, taking me to the first of what would be many surgeries, and how devastated I was that I had to go. I remember the series of surgeries that would follow in my elementary years, remembering how with each one, I needed to adapt at school and attempt to still fit in. I remember missing hours of school as we went to doctor after doctor, attempting to figure out what the next move was to get me as close to “normal” as we could. I remember getting court letters because of missing so much school due to my illness. I remember being sick.

Being young and sick is incredibly challenging in a myriad of ways. Honestly, I don’t remember what it feels like to be healthy. I have had physical issues from the day I was born and my invisible, autonomic and chronic pain issues started when I was very young as well. While other children made plans to go off to summer camps without a second thought or worried about normal childhood bumps and bruises, I was thinking about the long-term effects of seemingly small decisions. Going to a friend’s house for a sleepover, a favorite childhood pastime, went from a fun, spur of the moment idea to becoming a list in my mind of what would make it a fun experience without wrecking me for days after due to poor planning. I had to make a list in my head of medications I needed. I had to consider how accessible my friend’s house was as I couldn’t really climb stairs or walk very far. I had to consider what type of food would be offered and then, have an embarrassing conversation about my food restrictions, explaining I would get really sick if I ate certain foods. What most kids jumped at the opportunity to do required extra planning and care to make sure safety and health were always at the forefront.

I always assumed at some point I would get thicker skin and get used to not taking outside opinions about my life and health personally. But, as I’ve gotten older and more mature, I found that I still haven’t. I have both visible and invisible illnesses, so I’ve grown used to passing stares and people bluntly asking, “What’s wrong with your legs?” and been also called out in the middle of restaurants questioning my use of handicapped parking spots. I’ve been surrounded by vigilante church members wanting to lay hands and heal me in the dog food aisle of Wal-Mart and had people call me the most hurtful names I’ve ever heard. I’ve felt the sting of being called a faker and have had friendships end because they couldn’t understand or wouldn’t hang around long enough to empathize with the various modifications I have had to make daily. But, that sting further increases the sweetness of those who stand around me on a daily basis and who always can be counted on.

Because of the traumatic events I’ve experienced, I have much more of an attachment to the truly beautiful and authentic relationships I’ve experienced in spite of, and sometimes because of, my illnesses. I am recently married—something that I truly never thought would be a part of my story. My husband has the most perfect way of being so incredibly helpful to me without making me feel like less of a contributor. He offers to do the dishes or helps clean instead of berating me for being a bad housewife, which is how I often feel. We’ve lovingly created the “Jordan squat” for times when I don’t have the strength to get up from the couch or bed by myself. He does a squat facing me and helps pull me up so I get the help I need to stand and he doesn’t hurt himself. We gave it a fun name so I don’t feel like I’m always asking for his help to do what should be an easy task. It takes some of the heat of embarrassment off if we make it a fun thing. He loves me through my bad days and cares for me and is cheering me along when we can be physically active. I have a small but fierce group of friends who love me for who I am as a person and don’t discount me for my growing medical chart.

It is mind-numbingly frustrating some days to have to consider the various details and extra planning that goes into daily life. I am blessed to still be able to work full time at this point despite my various illnesses, but this does not come without cost. Most days, I suck it up and go to work. If I took off every day I didn’t feel well, I’d never go to work. And, I really love my job. I’ve been blessed with the opportunity to find a job that is fairly accessible and allows me to sit and rest when I need to, but I still miss more work than other employees. I’ve had to have incredibly worrisome conversations with my superiors about my conditions. I’ve explained that I will do absolutely everything I can in my power to be there and perform at my best, but there are some bad days that I get no notice for, and that just is part of my life. There is the added pressure of the concern of losing my job for each sick day I take. Not only am I constantly walking the tightrope of employment, but because I have had to use so many sick days, I often don’t get a vacation or get to take a break from work. I’ve had to use all my vacation days for sick time.

As much as I try and fight to get to work, there are some days when I am bed bound and in too much pain to even stand up. These days, having to walk to the bathroom 20 feet away is enough to bring me to sobbing fits. Honestly, I am too mad to see the positive side. I’m in my 20s and can’t get to the bathroom? This is supposed to be my prime of life! Most of my friends are galivanting around the world and going on wild adventures because we’re young and this is the time in life to take chances and be crazy—opportunities I feel I’ve been robbed of.

So many of my friends have competitions amongst themselves of how many 5K runs or Iron Man challenges they can do in a year, when I’d dream of doing it once in a lifetime. It’s infuriating to see all the things I wish I could do and should be able to do, but can’t because of my illnesses. There are some days I haven’t wanted to stick around and watch everyone else live the life I’d kill for. I didn’t ask to be disabled. I didn’t make some poor decision that led to my sickness. I was born in unforeseen and unfair circumstances and am charged with the task of making the most of what I have, but daily I am overwhelmed with feeling like society is pressuring me to compete at the same level as everyone else, regardless of health status or circumstances.

During my college and graduate school years, I had the most awful professor who absolutely did not understand my health issues and was not willing to work with me at all. I was in the midst of a flare and should have stayed in bed, but I had a massive project and presentation due that I could not miss. I managed to get the strength to get to class. Throughout my shaky presentation, I was constantly trying to stay conscious, knowing my body was pushed past its breaking point. I finished my presentation and immediately went out to the hallway and called an ambulance. I ended up in the hospital for a few days. Upon coming back to class while my professor was handing back our papers and discussing our presentations with the class, she pointed me out in front of everyone and said that I was just too nervous about mine and “got sick”—and that my grade would reflect that. It was then that I really got a slap of reality that my professors or future bosses may not give two cents about my wellbeing.

Despite the many negatives of chronic illness, I have learned that in some ways it has made my life better and in some aspects is something to be grateful for. I have had to mature far beyond my years and envelop myself in the confidence and self-worth to know that I can still have a long, meaningful life even if I have to modify it. I understand the power and magnitude of health because I don’t have it, and this has led me to be an extremely strong, sympathetic and solid individual who has become a daily fighter. I search for the authenticity of life rather than losing time and energy on the superficial things that inevitably fade away. Does knowing all of this and seeing the glass half full make those hard moments easy? Absolutely not. Does the deep authenticity of my small circle make the sting of outsiders hurt any less or mean I don’t want to fall apart and give in to the thoughts that I’m not good enough? Definitely not. But it does put it into perspective. Illness has forced me to solidify in my mind that even though some may find my life circumstances to be a disadvantage, I know what matters to me.

During college, I had to miss out on a lot of the “typical” experiences due to my health. I didn’t have the ability to pull all-nighters, indulge at bars around town with a bunch of friends or participate in any sports. However, I did get to meet my best friend and was really close to my neighbors because we spent so much down time together. Those relationships have stayed with me for almost a decade now, and will continue for many more years to come—and that is worth far more than the occasional night out. I learned the true meaning of friendship during various surgeries when a select few made sure I had rides to functions and could get around.

I never felt as though my devastations were “typical” or what others my age seemed concerned about. I didn’t break down because I didn’t get asked to a dance or because someone didn’t like me. I broke down because yet another treatment option had failed or another misdiagnosis was made. I didn’t burst into tears because a boy didn’t like me, I burst into tears because he told me I was a burden and too much to handle. But, through it all, the armor I’ve forged has made me into a warrior that shows my determination to fight for an incredible life.

Jordan Griffing is a chronically ill twenty-something who lives in Texas.

She is obsessed with her dog, Brinkley, and loves spending time with her new husband. By day she is a dietitian and by night is an aspiring blogger.