By Michaela Sullivan
Over the years, many people have said to me, “There’s always a light at the end of the tunnel”. But what I want to know is, what happens when there’s no end to the tunnel? If you have a lifelong chronic illness, you’re eternally damned to that tunnel. So you have to find light IN the tunnel.
As anyone with EDS, CRPS, or any other chronic pain condition understands, there are a lot of dark days. Especially in the beginning, there’s a fair amount of wallowing in self-pity, crying because it’s just not fair, and wishing your life was anything but this. And even after you’ve accepted the diagnosis, everyday is a struggle. Watching other teens go to school, parties, concerts, and sporting events is painful. Not nearly as painful as the physical pain that’s preventing you from doing these things, but it’s still pretty painful in a different way.
Part of the darkness of the never-ending tunnel is loneliness.
When you’re out of school, people often forget you. Out of sight, out of mind. And you know deep down it’s not their fault, but it still hurts. It hurts scrolling through Instagram watching your group of friends all at the beach, while you’re laying in a dark room, trying to find a distraction from the pain. But a light IN the tunnel is when people come to visit. For me, I always look forward to visits from friends. I often initiate them, but the fact that they agree to come means a lot to me. It gives me something to look forward to, and a reason to get out of bed, get dressed, and put on my best happy face.
Another darkness that comes with chronic illness is the depression that many spoonies develop.
Let’s be honest, who wouldn’t be depressed in this situation? It SUCKS. Us TCAPP kids are supposed to be out there living our lives, but instead we’re more often than not on the inside of a hospital or doctors office. The depression is a result of many things. The pain, the inability to be “normal”, the loneliness, and the stress. Finding light in that darkness is a challenge, one that I myself have struggled with. Drawing, writing, watching new movies or shows, Skyping with friends, and music helps and I find it's the best way to beat the pain induced blues.
The final darkness that I’m going to discuss is the stress.
Stress of school, work, and other commitments. For most sick kids, school is a HUGE issue. We aren’t unreliable, our health is, which often leads us to miss A LOT of school. Most chronically ill kids are homeschooled at least part time. But even that is incredibly stressful. Normal kids have stress of English papers, chemistry homework, and general school stuff. Well us chronically ill kids have that too, but it’s a bit different. You see, pain and medication can cause brain fog. That’s a fact. So more often than not, I’ll be in high pain during a lecture from my tutor, and be listening at the time, but when I go to actually do the homework, my brain will fail me. Instead of focusing on the algebraic equations that are being explained to me, I’m focusing on the fact that my hip is literally sideways thanks to my EDS. I’ll plan on doing my Brit Lit paper on a certain night, but end up in the ER instead with a dislocated shoulder.
This year, as a result of the stress, my anxiety is higher and I’ve been having panic attacks. I’m sure many of you can relate, which is why we need to find light in this darkness as well. One thing I always tell myself is that when I graduate, it will mean more to me than to the average kid. I’ll have overcome a lot, which will make it even more special. Another light is that I’m educating the school on how to deal with chronically ill children. While I may have cried many nights over the stress that comes from the chaotic system my school uses to educate me, I know that they’ve learned from me. I hope and pray that this will never happen to another kid.
So, while incurable chronic illness may be a never-ending tunnel, there are cracks of light inside.
You just have to look hard enough.