Being a teenager with lupus.
Probably the most horrific thing you can think of right? End of the world type stuff? Your whole life is over? You have no future? These are probably some of the things that might go through your head when being diagnosed with lupus at 16 years old. Or “Holy crap, I’m going to die.”
Well… take a deep breath and sit down because, guess what? This is not the end of your life. You still have a future. Why? Well, because I do. I still have plans and dreams that I intend to live out. I still want to and will be successful, despite what other people may say.
Here’s the story:
I was 10 years old when I was diagnosed with systemic lupus. Then about 2-3 years later, I was diagnosed with lupus nephritis (lupus that affects the kidneys). Now, 10 years old is a very young age and I didn’t really understand that I was sick. My parents didn’t really understand what the disease was either, so it was hard for them to tell me what I was dealing with. I just lived my life like any other average kid, just with extra medications (that I hated) and some fatigue. Nothing too bad right? It wasn’t until my 7th grade year that things got really bad.
In 7th grade, I caught pneumonia, which normally isn’t too bad, however; for an immunosuppressed 13 year old it is. Since my body couldn’t fight off the bacterial infection, my body freaked out and things started shutting down. Which caused me to be put on a ventilator and into a medically induced coma. Which I don’t really remember at all. All I remember from that day was I was at my grandmother’s house and I wasn’t feeling well. My back was hurting and nothing helped. We tried, heat packs, ice packs, pain medications, baths, repositioning, and none of it worked. So I went to bed that night crying in pain, which is not the best way to go through the night. In the morning, I felt somewhat better but still pretty miserable and was kind of just walking around the house in a daze. My dad came over and didn’t think much was wrong nor did my grandmother. However when I proceeded to throw up while on the phone with my mum, then something was up. My mum contacted my rheumatologist who told us we needed to go to the ER. Which I was wondering why that took so long to figure out. After that, everything pretty much goes blank. I remember getting oxygen, monitors beeping, but until I was recovering, I don’t really remember anything. Even when I go back and try to remember, I can’t. People just tell me that I was pretty much close to death. If not, practically dead.
After that things were up and down, I was diagnosed with nephritis and got an amazing nephrologist and my life went back to normal. To a degree. I started quitting sports because I didn’t want to let my team down. I also started missing more and more school. But at the same token, I finished 8th grade with high honors, learned a new instrument that I loved, and continued in high school and was in several different programs that I enjoyed that put me on a good track. My freshman year was kind of rough, I missed a month of school due to an injury and my teachers did not want to cooperate with my needs. Then the summer of my freshman year, I started chemotherapy. I didn’t lose my hair or anything but it was still a pretty rough year. I started in the summer and continued through my school year. I missed about 4 months of school due to chemo and chemo side effects and different side effects from different medications that I was on during the process. I lost some friends. Made some new ones, as well, but all in all it was wasn’t all that bad.
Once again things were sort of normal, however I was still dealing with the side effects of chemo. Education wise, I moved to a new school where my needs were recognized and addressed the way they were supposed to be. I ended up going to my junior and senior prom. Got rid of a controlling and emotionally abusive boyfriend and found an amazing caring one. Walked the stage, actually walked no crutches or anything. Got my diploma and graduated with honors. Applied for a job and am currently working as an intern facilitator for girls inc and planning to go to college at Concordia University entering the pre-nursing program in the spring. The only obstacle I have right now is dialysis. Which actually scares me, but because of what I have been through, I’m reassured. I’m reassured that I am a strong young woman and that I can face anything.
You see, being a teenager with lupus isn’t the best thing and yeah, there will be lots of highs and lows. But we can’t let it stop us from being the people that we are meant to be. Even with all of the obstacles I’ve faced and the many that are yet to come, I still find ways to overcome them and I try not to give up. It’s okay to take breaks, it’s okay to make mistakes, but we can’t let lupus take a hold of us and destroy our spirit or will to do the things that we want to do or be the people that we want to be. It’s okay to ask for help for support. That doesn’t make you weak, if anything it makes you stronger because it can be so hard.
If I can do it, you most certainly can.
So take a deep breath, and take life by the handle bars because you’ve got this, and your ride has just begun.
Genesis S. Berlin
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2019.