By: Molly Gavin
Everyone’s affected by Lupus differently, what were your first signs of Lupus? How old were you?
Honestly, the only reason I ever found out something was wrong was in May of 2011, I passed out in school and I went to the hospital. They ran bloodwork and noticed my red and white blood cell count was off. They sent me to a hematologist where I was initially diagnosed with antiphospholipid syndrome which is the first stage of lupus. Luckily my mom worked at a doctor’s office at the time and she asked one of the doctors to review my labs from the hospital. He said it’s either lupus or leukemia, they have the same genetic strand. After going to numerous doctors and taking medication, my blood work showed that it was Lupus. I was also diagnosed with Lupus nephritis in 2014 which is lupus in my kidneys. I was officially diagnosed with lupus at 16/17 and lupus nephritis at 19. I’m currently 29 years old.
What is something that you would like everyone to know about this condition?
Just because you can’t see someone struggling externally, they’re struggling internally.
Would you say it affects your everyday life? If so, how?
Absolutely, it affects my everyday life. Two of the most common lupus symptoms are joint pain and fatigue. Being in constant pain makes doing normal things a chore, like getting out of bed or getting dressed. And the fatigue is brutal, no matter how much I sleep, whether it’s 2 hours or 20 minutes, I feel like I never slept and coffee does absolutely nothing.
What impact did it have on you when you were first diagnosed? How did things change for you?
The biggest impact was on my mental health. Mental health is definitely a key thing in a chronic condition. Your body is so unpredictable so you don’t know what you’re able to accomplish during the day. You’re trying to mentally prepare but your mind is constantly racing.
What kind of resources would you recommend for those who have been recently diagnosed?
One resource that helped me was the lupus website. It breaks down all the different types of lupus. Also, talk to your primary care provider and see if they have any recommendations on where to turn. Also, there’s so many groups on Facebook you can join and reach out to others. I’m part of multiple groups. It’s amazing to hear other people stories and realize they’re literally in the same boat as you. Also, the Lupus Alliance of Upstate New York is a wonderful place to learn about lupus.
What is something that you learned about lupus, or yourself, throughout your journey with lupus?
One thing that having lupus taught me was how strong I truly am, I know how frustrating and scary it is when you get that first diagnosis, going through countless tests, medications, and blood work. It’s all overwhelming. But as long as you have a solid support system, things get a lot easier. Also, don’t be ashamed in using medical equipment to make life easier. I personally use a cane from time to time and a handicapped tag when I do have to drive somewhere. If it makes life easier to live, use it! Don’t listen to people’s comments/judgements about being a young person using something that helps you. I’ve also been a lot more grateful for the life I’ve been living. My amazing mother and stepdad are always by my side if I need help with anything. I’m also grateful to be a Lupus Warrior, thinking about everything I’ve gone through leading up to the current moment of writing this response makes me cherish life a little bit more.
If you or a loved one is experiencing symptoms of lupus, it is important to follow up with your health care provider right away. it is important to follow up with your health care provider right away. Visit wnymedical.com or call our office at (716) 923-4380 to schedule an appointment today.