4 Things I Wish People Knew About Having A Chronic Illness
Health and Wellness

4 Things I Wish People Knew About Having A Chronic Illness

There's more to it than just being sick.


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.

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.

Everyone remembers the first time they went to one of the Disney parks. Spinning in teacups and having Goofy wrap his arms around my 8-year-old self were some of my fondest childhood memories, and I'm surely not alone in that.

Keep Reading... Show less

These Superfood Beauty Products Show Kale And Matcha Work For SO Much More Than We Thought

Just another summer's day with a cold glass of kombucha on my face.

I've been vegan for about six years now, so a love for fresh vegetables and superfoods has now become a core part of my being. Don't get me wrong. I love my indulgent, creamy pastas and truffle fries more than anyone. But I keep most of my focus on eating clean and healthy so I can indulge guilt-free.

But I'd say about a large part of my diet has always, unknowingly, included superfoods. Being Indian, lentils, beetroot, garlic, ginger, and whole grains have been core essentials on the family dinner table since I could digest solid foods.

Keep Reading... Show less

Now that college is around the corner for most if not all young adults, students once shook by a pandemic now have to shift their focus on achieving their career goals. As if we thought we had it together already! As an NYC girl, I have always seen myself as a hustler, hungry to advance my career in journalism by having one skill: working hard.

Keep Reading... Show less

5 BBQ Essentials Every Vegan Should Bring To Avoid Summer Cookout FOMO

You'll have your whole family drooling when you bring these goodies over too.

All vegetarians and vegans can relate when I say this: summer barbecues aren't fun when there's nothing you can eat.

Keep Reading... Show less

Kourtney Kardashian has decided to leave "Keeping Up With The Kardashians" after nearly 14 years and although we saw this coming, it breaks our heart that she won't be there to make us laugh with her infamous attitude and hilarious one-liners.

Kourtney is leaving the show because it was taking up too much of her life and it was a "toxic environment" for her.

Keep Reading... Show less
Health and Wellness

We Asked You How You Felt About Resuming 'Normal' Activities, And Some Of Your Answers Shocked Us

The New York Times asked 511 epidemiologists when they'd feel comfortable doing "normal" activities again, considering COVID-19. We asked our peers the same thing, for science.

Last month, the New York Times surveyed about 500 epidemiologists asking about their comfort level with certain activities once deemed normal — socializing with friends, going to the doctor, bringing in the mail. That's all well and good for the experts, but they are a very niche group, not the majority of the population. What do "normal" people feel safe doing? In certain states, we've seen how comfortable everyone is with everything (looking at you, Florida), but we wanted to know where Odyssey's readers fell on the comfort scale. Are they sticking with the epidemiologists who won't be attending a wedding for another year, or are they storming the sunny beaches as soon as possible?

Keep Reading... Show less
Facebook Comments