As a teenager, I was diagnosed with a chronic illness known as Ehlers-Danlos Syndrome. In addition to EDS, I was diagnosed with chronic pain and fatigue. Although my illness may be different than yours, I think that a lot of us with chronic illnesses share the same struggles. Here is just a small insight to the life of a person with a chronic illness:
1. You’ve never seen the end of a movie because you always fall asleep.
Okay, that’s not completely true. I have seen the end of a movie. But chances are it took me a couple tries because the back of my eyelids seemed much more appealing than the tv screen.
2. You’d rather stay in and relax on Friday nights than go out.
It's sad but true. As fun as it would probably be going out, my bed it much more appealing. I don’t have put nice clothes or do my hair to cuddle up in my blankets and lay in bed.
3. A power nap turns into an all-day 5 hour nap.
A nap has easily become a part of everyday life. I typically fall asleep around 1 and wake up just in time for dinner. And if you’re wondering, no, I am not ashamed.
4. You wake up tired.
No matter how early I go to bed or how late I sleep in, it never seems to be enough. Waking up feeling refreshed is not so common in the chronically ill world.
5. Coffee doesn’t phase you
I love my coffee. Especially Dunkin' Donuts iced coffee. I can drink it at any time of the day and it doesn't give me the shakes or give me energy (I demand a refund). Truth is, I could drink coffee 5 minutes before hitting the hay and I will still fall asleep within minutes.
6. Medicine also doesn’t phase you
Growing immune to medicine happened a long time ago. No matter what the dosage (within reason, of course) it never kicks in.
7. You’re exhausted by 2 p.m.
Back to #3. A nap is mandatory.
8. You get the worst looks when you park in a handicap spot
You should see the looks we get. Yes, I realize I look like a normal teenager, but on the inside my body is screaming in pain. I promise I only park there when it is absolutely necessary so please don’t hate me for my parking decisions.
9. You're almost on a first name basis with your doctors.
I see my doctors more than I see some of my family. We see each other so much that we might as well be Facebook friends.
10. You know everything about your body
You know everything you’re allergic to, what your body can and cannot do, what works for your pain, how much sleep you need in order to be productive, and you know all of your diagnoses (and their descriptions).
11. You appreciate the small things
One good day. One day without pain. One smile. One friend to ask if you’re feeling okay. One physical therapy appointment that didn’t make you cry. One good doctor.
12. Sometimes you thank your illness
As odd as it may sound, sometimes you give thanks for your chronic illness. Not because you enjoy it by any means at all, but because in a way it made you a better person. It made you appreciate what you did have. It made it easier to tell who your real friends were and who would be there for you when things went crashing down. You thank it for the tears that made you stronger and the doctor’s appointments that made hospitals not scary at all. Lastly, you thank it for the good (even though it may be small) that it did indirectly bring to your life.
That’s how I know I have a chronic illness.
