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I am one of the 1.5 million Americans living with lupus. It’s a tough autoimmune disease that affects each individual in different ways. For instance, some people might get a butterfly rash on their face, or experience achy joints every other day. Others, like Selena Gomez, end up needing a kidney transplant due to more severe complications of the disease.
There are actually four different forms of lupus, but a majority of people (like me) have systemic lupus; it can affect major organs, including the kidneys, lungs, brain, and heart.
Essentially, people with lupus have an overactive immune system. So instead of strictly attacking bad things in your body, your immune system will attack anything it chooses to go after. That’s when complications happen.
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Now, I could hit you with a ton of other stats and numbers about who has it and who’s more likely to get it. I could even list out a bunch of symptoms or treatments pulled from WebMD.
But I’ll cut to the chase: Lupus is really weird and individualized; it messes people up in all kinds of different ways. It would be a disservice to tell curious minds out there that it’s just a horrible, lifelong disease with no cure. Because as I’ve discovered, living with lupus can be — and is — okay.
So here’s what it’s really like to have lupus — from diagnosis to everyday life.
The Pain You Experience Before Receiving Treatment Can Be Unreal.
Before I was diagnosed in October 2014 at age 23, I had no idea what lupus was. All I knew was I could barely move my wrist without feeling a ton of pain, I had a huge rash on my face that kept growing every day, no matter how many face products I tried, and I could barely eat anything due to all these weird sores in my mouth. It was just really bad.
But as someone who (stupidly!) liked to put off doctor’s visits until the absolute last second, I pretty much spent the entire summer before my diagnosis stuck at home, telling myself and everyone around me that I was okay. Much to my mom’s dismay, I would pop back an Advil every now and then and hope that the pain would go away eventually.
Spoiler alert: It didn’t.
It got so bad that I couldn’t physically walk up the stairs to go to my room without crying. In fact, I didn’t see my bedroom or the second floor of my house for about four months. I insisted on sleeping in the guest bedroom because it was downstairs.
The pain in my legs was so bad that I became filled with dread every single time I had to go from a sitting to a standing position. I couldn’t even use the toilet without calling for someone to come help me stand up.
Looking back, it was a mistake to be so stubborn. While I thought a quick doctor’s visit would be the end of it, I was very wrong.
Getting A Legit Diagnosis Is Not Easy.
When my parents finally dragged me to the doctor, I was sent to the emergency room right away. I had rashes all over my body, my heart was beating super fast — like I was in the middle of running some kind of marathon — and I could barely move without wanting to die. The pain is hard to describe.
But there’s not just one single lab test you can take. You can’t just pee in a cup or get your blood drawn once and get back test results that say, “YES! You have lupus!”
I had to take all kinds of different tests; so many that I had a huge bruise on my arm from all the blood they were drawing nearly every other day.
Sometimes, getting diagnosed with lupus can take years. And unfortunately, because lupus affects people differently, there’s also not one single treatment that works for everybody. It’s a lot of trial and error. When that happens, sometimes things can get worse.
For instance, I was given a really strong medication, but it ended up aggravating my lupus. Because of that, my kidneys started to fail. Doctors told me if I didn’t respond well to one form of medication, another one might mess with my fertility, and if that one didn’t work, they told me a kidney transplant might be on the table.
Getting The Right Treatment Can Do Wonders For Your Life, But Certain Side Effects Can Make You Miserable.
I was lucky because I had a great team of doctors who knew what they were doing and acted right away. Most lupus patients will see a rheumatologist regularly, in addition to a primary care doctor. Others, like me, need to see a kidney doctor or cardiologist regularly.
As far as medication, right now I take a combination of four different pills and a couple of important vitamins twice a day for maintenance. When I first got out of the hospital, it was triple that amount.
A lot of people will take steroids, such as prednisone, to reduce the inflammation they get from lupus. If you know anything about taking steroids, you know you want to stop ASAP. When I started taking high dosages of my medications, my hair was falling out, I lost a ton of weight (others tend to gain it), and I was extremely depressed. Thankfully, as my dosage went down, my hair went back to its normal state and my depression lessened.
Unfortunately, taking steroids will always be a part of my life. My doctors are trying to get me down to the lowest possible dosage without making my lupus worse, but it’s a lifelong thing. So if I happen to get a flare-up in the future (hopefully not!) they’ll have to up the dosage again, and I’ll have to deal with all the side effects that come with it.
You’re More Likely To Get Sick Around Flu Season.
Because lupus meds suppress your overactive immune system, you’re very likely to get sick every time flu season rolls around. Aside from the flu, you’re also highly susceptible to shingles — which you definitely don’t want to catch. I thought all the aches and pains from lupus hurt, but no. Shingles is the absolute worst thing in the world. So if you can, make sure to get all of your shots. Since your immune system won’t be working for you as well, it’s important to be mindful of your health and do all you can to protect it.
The Physical Issues May Be Gone, But The Emotional Ones Stay.
Most days I’m fine with having lupus. I wake up, take my meds, go about my life, take my meds again, and go to sleep. For the most part, my rashes are gone. Honestly, my life is back to how it was before I got diagnosed — and I’m actually a lot healthier in many ways.
For instance, there are really no food restrictions when it comes to lupus. But because I need to keep my kidneys healthy, I try to stay away from anything too salty or sugary — and that’s great for my health overall.
Using sunblock and trying to staying in the shade when I’m out are also super important. Lupus loves sun. So if you’re in the sun a lot without any protection, your chances of getting a flare-up are high. And exercise is important, too, of course.
I do all of that just fine. These small adjustments have just become a part of my life. I don’t get a lot of the achy joints or extreme fatigue that other people do. Overall, I manage my “spoons” just fine.
Having lupus is not a big secret. It’s also not a big deal. My friends know about it, and guys I’ve dated know, too. It’s just one small part of my amazing life.
The challenging part is working through all of the emotional and mental stuff that comes along with having a chronic illness. For one, I still get really bummed out around October when I think about what I went through in the hospital. I get triggered. At the time of my hospitalization, I legitimately thought I was going to die. So I always end up thinking about my life (and what the future is going to look like).
I also worry about getting brain fogs again. As a writer, it is terrifying to think that I could lose brain function and not be able to work.
There have been times when I’ve had to deal with really bad anxiety and depression, too. When I was in the hospital, I constantly had panic attacks. Nurses and doctors would rush into the room to get me to stop screaming. I later learned it was the high dosages of all the medications I was on. Thankfully, I’m not going through that anymore.
But here’s the truth: It’s always a constant fear in the back of my mind that it could happen all over again. There’s no cure for lupus right now, so it’s never truly gone, and flare-ups can happen at any time. This simple fact can be anxiety-provoking, if you let it.
Something else egging on my anxiety is the fertility component. While I’m in absolutely no hurry to have kids at this point in my life, I do want them eventually. And lupus complicates things.
I’ve read stories of women who have miscarried a few times because of lupus (which can end up attacking the fetus). Sometimes women will have no symptoms at all during pregnancy, but then will have a full-blown issue when the baby arrives. And many times, the mom and baby are perfectly fine. So I find myself wondering which category I’ll end up in. I also ask myself, “Will having lupus affect my chance of having kids? What will my future husband think if I’m not able to?”
With Selena Gomez’s recent news, it made me think about my situation. I’m doing really great right now, but what if I need a kidney transplant in the future? Do I even know anyone who would willingly give me a kidney if I needed it? These aren’t questions I expected to ask myself at such a young age.
I’m glad her opening up about lupus has inspired others to look into donating a kidney, because it’s not something many people really talk about.
Having Lupus Has Given Me Confidence To Live My Life Fully.
Sometimes it feels like lupus hasn’t changed my life in drastic ways. I’m in remission, and have been for a couple of years now. But my experience with lupus has changed my perspective on living life.
I have tons of scars on my body from lupus-related sores and rashes that I would have been super self-conscious about before. Now, I see them as battle scars. It was a dark time in my life, but I came out victorious.
I’m also more mindful about life in general — what I’m doing, who I am, and what I want to accomplish. Before, I felt like my approach (like many young people, I’m sure) sounded something like this: Oh well, I have all the time in the world. I’ll get to it.
But now, I feel like life’s too short. I need to do everything. I need to take every opportunity as it comes, or create opportunities for myself. Lupus can strike again at any time. I guess I’m just a lot less scared of rejection — and am instead more open to putting myself out in the world.
I’m also more mindful about the people I invite into my life. Lupus can be aggravated by emotional distress, so I’m not going to waste my time stressing over people who are toxic or who don’t want to be in my life fully. It’s just not worth it. I see this as a gift lupus gave me.
But if there’s one true thing I’ve learned from this experience, it’s to be kind.
Lupus, like many other diseases out there, is considered an “invisible illness.” Someone may not look sick on the outside, but you never know what he or she is going through (or what they’re already endured). You just never know what being nice to someone can do for their day — I know this from being on the other side.
If you want to learn more, the Lupus Foundation of America can provide all kinds of great information and support.