PATIENT STORY

Growing With Lupus

By Samanatha Sebestinas

Being diagnosed at a young age has been a lot for me during my life - some good and some bad. The diagnosis itself has caused my life not to go the way I planned or thought, but it’s surely helped me grow over time.

I was diagnosed with SLE at 18. I was unable to walk or even get out of bed due to extreme pain. I had to figure out a lot of things alone and that was the most terrifying part, because I was not able to rely on family or friends to just hold my hand and tell me everything is going to be okay. It was hard trying to figure out what lupus was and what was happening to my body, along with deciding on what to do with my life now.

As I talked about my diagnosis in the My Lupus Living Room podcast, I was young and scared; and let’s face it, I didn’t know any better. I didn’t want to take my prescribed medication because I just didn’t want to, and it’s hard to swallow pills (it still is, to be honest). When I did take my medi- cation, I thought they were not working. I thought it would be like taking aspirin for pain. After a few hours, I was expecting the pain to be gone. But with lupus medication, that wasn’t the case. I would still be having extreme pain, and I felt that it was just defeating. Why do I take these pills if I am still in pain, I have horrible side effects, and they taste awful? I kept throwing them back up.

Over time, I was losing hope; and, to be honest, I didn’t want to be here anymore. There were a number of times where I would just sit on the shower floor and sob and think that I didn’t want to do this anymore because the pain was making me miserable. And, there were many therapists I would see and then stop seeing because I thought I wouldn’t be here the next day anyway, so what’s the point? It’s sad to think about it, but it happened and still happens sometimes.

Being a 23-year-old in a world where there is not a lot of informa- tion and help for disabled people, where social media causes us to think we are supposed to live a certain way or accomplish certain goals, made me feel embarrassed to use things like a cane to walk or a shower chair so I’m not over exerting myself.

It’s hard for me to keep a job in the real world because I can’t stand too long without pushing myself and feeling severe pain the next couple of days and being expected to just push through it.

When I try doing work on a computer, the time spent staring at the computer screen causes me to have horrible migraines. It’s especially hard when you are known for pushing yourself and not giving up. I learned that I have to take care of my mental and physical health and that we should care about ourselves, but it is hard to do so while trying to afford living in the world. It’s a challenge when you want to clean the whole house, cook dinner, go out at the end of the night and hang out with friends; but you can barely get out of bed due to the pain, fatigue and difficulty breathing. I’ve tried for disability many times; but it seems as if age is just a number, and they don’t even look at symptoms and how difficult it is to work a retail job full-time while standing, walking and dealing with customers. I have truly tried many different jobs to try to find work that I can do.

My relationship with my significant other has also become so challenging, being sick and struggling and not being able to work. Sometimes my boyfriend understands, but with both of us being so young, I feel that I am more of a burden then a partner, which makes things even more stressful and difficult while being sick. All I want is to be loved and cared for; and with an illness, it changes the real meaning of love.

Recently, I was diagnosed with lupus nephritis and to say I was scared out of my mind is an understatement. I’ve been doing infusions since I was diagnosed, been poked with needles endlessly due to having challenging veins, and have had skin biopsies. But in order to get the lupus nephritis diagnosis, I had a needle going into me while being sedated, and I’m all alone with no family or friends, just the nurses. I am tormented because I would rather show I’m happy and not afraid. If I showed what I was really feeling, I wouldn’t be able to stop crying. I am told that my lupus nephritis is stage 3.

This new diagnosis made me feel confused again. I still have problems taking my pills, I still cry in the shower when I’m alone, and I buy so many stuffed toys I’m running out of room - just so I can feel some type of happiness. I see all the people I went to school with accomplishing so many things, marriage, children, great jobs, traveling, while I am trying to figure out living life with lupus. At the time of the lupus nephritis diag- nosis, I had no idea that I would be accomplishing the biggest thing yet on my lupus journey - being here today to write my story.

I got a call from a weird number a few months ago. When I answered, they told me it’s the Lupus Foundation of America, Greater Ohio Chapter just checking up and seeing how I am doing. I don’t even remember ever giving my number to the chapter, but it’s so nice to talk to someone else who just understands. The patient navigator is someone who gets me and what I’m going through. She tells me she has all the same symptoms as me, but she is just 4 years older than I am. She says not to give up because even though things seem hard now; over time, it will get better and to keep going.

Something snapped inside me. Maybe this is it, that calling that everyone gets when you find yourself able to get excited and inspired by something, to make a change or have your voice be heard. When you realize maybe crying in the shower everyday because you hate a disease that’s never going away, but you know you are allowed to grieve and to allow yourself time to accept it and try something different. This is the growing stage I am in right now. It’s still hard, because I’m only 23, and I still feel like I’m 18 all the time. I look back on old photos before getting diagnosed and think to myself, I wish I could go back. But, I think it’s time for me to take pictures of myself today; and I think it’s time to move forward.

Looking back at these past few years, I see that I have accomplished and done so much. I’ve stayed strong and pushed through and conquered the battles as only warriors can. They say God gives his strongest warriors the toughest battle, and if living through a chronic autoimmune disease isn’t a battle, then I don’t know what else would be. I want to move forward and become friends with lupus instead of it always beating me up, even if I still can’t find the right job, even if I can’t achieve what everyone else is doing or posting on social media, even if I can’t look like a supermodel or have that picture perfect life. I know I can still accomplish the greatest goal, to live with lupus and make a difference.

And, so can you! Don’t give up. Don’t let your battles defeat you, and remember you are not alone, even if you feel alone and scared. There is always someone out there who is feeling the same way you do at that exact moment.

For all the young lupus warriors out there, don’t give up. We got this, and don’t forget to grow!