People & Inspiration

Daily Diaries: What It's Actually Like Living With Lupus As A Young Adult

Daily Diaries: What It's Actually Like Living With Lupus As A Young Adult

 

By Mikka Caronan

I was a very healthy and active person until I was diagnosed with lupus (systemic lupus erythematosus) last January 2018. This is a chronic autoimmune disease where your immune system can’t differentiate between your healthy tissues and the foreign bodies (bacteria, viruses, and germs.) As a result, it attacks your own body. Unfortunately, there is no cure for lupus yet, so it’s just controlled by medications.

I was just 21, right when I was starting to enjoy the “young adult” life, traveling, earning money by myself, having the freedom, and even starting a vlogging channel. But, suddenly, I felt like my body was giving up on me. I was getting weak, losing weight, having on and off fever, and losing appetite. I just didn’t feel like myself anymore.

Weeks passed, and it got much worse until I had a seizure and was rushed to the ER. I was unconscious for 3 days. I woke up in a hospital with oxygen and nasogastric tube (a tube used for feeding) attached, and I was even wearing a diaper! I was first diagnosed with pneumonia before the seizure, I had a really bad cough that it was difficult for me to breathe. I had to undergo a lot of tests such as ECG, MRI, ANA, lumbar tap, x-ray, and lab tests to know if there’s something wrong. Then on my second week, I was diagnosed with lupus. It felt like my world turned upside down.

When I got discharged, there were a lot of changes—I was weak, couldn't be exposed to the sunlight because of photosensitivity, was suffering from hair loss, and I weighed 39kg. I didn't even want look at myself in the mirror or take selfies.

I couldn't help but think about my future. What will happen to me? Will I be able to live my life normally and be able to do the things I love again?

Living with lupus lets you live normally when you don’t have flare ups. But when it starts to attack, you can’t just stop it instantly. You’ll feel the uncontrollable fatigue, joint pains, or it can even attack your organs. But what are the other changes in your life if you are living with an invisible illness? In case you're in the same situation, here are the things that we all are struggling with:

1. You have to control your emotions.

Lupus is a stress-related illness so emotional stress or overworking your body is a big no. You have to set aside your personal emotions even if the world is tearing you apart because it will have a big effect on your health. So no matter how big your problem is, you have no choice but to calm yourself and look on the brighter side.

2. Sometimes, it’s just hard to balance health and work.

Yes, on good days you can do everything. But during the bad days, as much as we want to do everything, we just can’t. I just put on a big smile and say “Of course, I’m okay. I can do it,” even if deep inside my body is dealing with something else. It’s just hard to say you’re not okay and you need time because you don’t want them to think you’re too weak for this job. And some may not understand your situation because "you don’t even look sick."

3. There are times when we get judged by people.

Battling invisible illness means looking normal from head to toe. That’s what most people don’t understand. People would tend to give you “the look” when you order in a priority lane. Well, we can’t really blame them. We’re obviously young, and we look okay. Maybe they think that we’re just ignorant kids who don’t know what a priority lane is. Luckily, I haven’t experienced being judged when I line up there, but I know people who have been because of it.

4. It’s hard to keep up with everyone else’s pace in life.

There are things or situations that you can’t really control when you have a chronic illness. It’s hard when you must have your own routine to protect yourself, but, in the real world, you still have to follow everyone else’s normal pace because they won’t wait for you. You can’t help but feel that the world doesn’t stop for you when you are sick.

5. You’re not taking your time for granted.

Yes, this is cliché for everyone. But for us, we want to spend our life productively while we’re okay because you’ll never know when your body will act up. You will feel a little pressure but, hey, we should all live efficiently, right?

6. You have to be financially ready.

Although you have to be physically and mentally okay, dealing with invisible illness includes being financially ready as well. As I’ve mentioned earlier, we are not in control of everything. So we must be ready, even for the worse.

7. You have to love yourself.

 

This applies to everyone, with or without invisible illness. You should always come first. You have to prioritize your health all the time and love yourself even more during the hard times.

But what keeps you going?

For me? My goals in life— to live happily and to give back everything my parents had given me. I've decided that I won’t let this disease hinder my plans and goals in life.

To all the lupus warriors out there (or even who are battling other illnesses,) you are strong, and we are stronger than our battles. I hope you continue to fight and look at things in a positive way despite the pain. Don’t let it pull you down.

Disabilities don’t just show physically and most people may not understand that. We look and act normal because we put a lot of effort to take care of ourselves to be able to function normally. Just because you don’t see it, it doesn’t mean that our pain is unreal. We may not understand everyone completely but I hope we could all be a great support system to help everyone live an easier life.

If you want to know more about lupus, I shared my story on my YouTube channel:

ALSO READ: #LoveHard: We Asked This Couple To Share Each Side Of Their Love Story

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