As someone who lives with Ehlers-Danlos Syndrome, Endometriosis, and migraines, the majority of the past five years have been full of doctor's appointments, new medications, physical therapists, and a lot more. It all started when I began developing chronic migraines in the fourth grade. After a few concussions, a fainting spell, and an ER visit when I was a freshman in high school, everything else started to fall into place. The hardest part of having a chronic illness isn't the fact that you're sick, it's the fact that you're going to be sick for the rest of your life and you have no control over it. So, here's what I wish people knew, instead of having false assumptions about having a chronic illness.
1. It's the hardest thing in my world.
It's exhausting being sick. I am drained every day because the pain manipulates my way of life to the point that chronic fatigue takes over. Every second of the day my body is fighting. It's fighting off the aches of my joints. It's fighting every ache and pain that no amount of medication has been able to help. Being sick is a battle, and I don't have an army to help me fight – it is the hardest thing in the world. You forget who you are because your identity becomes so attached to your illness no matter how much you want it to go away. I have had so many mental breakdowns purely because I was so tired of being sick. You don't want to cope with the fact that you will be like this for the rest of your life. It sucks, but I don't have time to pout because I have to wake up the next day and fight the battle all over again.
2. It's heart-wrenchingly lonely.
High school was when I was at my all time low. My junior year I missed so much school, I was a complete mess. From my freshman to junior year, I lost a lot of friends who I thought would continue to support me. I don't blame them for leaving or even me pushing some of them away. When I was healthier they used to invite me to go out and eventually I would have to continually say no because I wasn't feeling well. I couldn't stand or sit for more than 20 minutes at a time, and that was on a good day. I didn't want to be a bother to anybody. I wanted the people in my life to live the way I wanted too. The invitation to spend time with people eventually faded which at first made me mad, but not at any of them. I'm the sick girl who always puts a damper on things; I wouldn't have wanted me around if I was healthy either. On the days when I couldn't sleep because the pain was so bad or I was lying in the emergency room in excruciating pain, that's when I wish they wouldn't have left and I that I wouldn't have pushed some of them away. I wish that I had someone to lie in bed with me on days that I don't feel well and help me take my mind off things. I wish I wouldn't get that expression of pity when I tell them what's going on. It's hard for people to see me despite all the scars, the braces I had to wear, the doctor's appointments I go too, and the constant expression of pain on my face. I didn't have enough energy to maintain healthy relationships with my friends because all of my energy went into trying to heal my body.
3. It's not just laying around all the time.
I don't really remember a time where I wasn't in pain. However, I do remember when I started having to wear multiple braces to school, having to sit out in P.E., and all that fun stuff. I learned to block out people's comments really quickly. Like I said, my junior year was my hardest year for me. I missed more school that year than I had ever missed. I missed out on a lot academically and socially. Whether I was being dismissed for a doctor's appointment, because I didn't feel well or I came in the next day from being absent for one of the two, I always heard from my peers, "you're so lucky you're getting dismissed" or "you're so lucky you weren't here yesterday." As much as I hated waking up at 6:30 in the morning and taking a bus to school, I would have much rather have been at school than be at the doctors' or bedridden. Being sick, especially during a flare up, is the furthest thing from just laying around and binge-watching Netflix all day; it's trying to sleep off the headaches and being stuck in your dark room. Its forcing yourself to move so your joints don't get even more stiff and cause you more pain.
4. It's not defeating me.
Having a chronic illness can be debilitating, physically and mentally. You lose a lot of things, but mostly, you lose the way things used to be. You lose your friends, your hobbies, and your normal routine. You lose yourself to the pain. It's a scary thing at times. No, all of the time. It's scary not knowing when your body is going to flare up on you and if you're not going to be able to do anything. If there's one thing that being sick has shown me, it's strength. It's my will to fight to get stronger. I am not any less of a person because I am sick – I am still me underneath it all.
