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Growing With Lupus

by | Mar 28, 2024

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 medication, 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 information 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. 


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