14 May Living With Lupus: Part 1
I was diagnosed with Lupus in November of 2011. Let me apologize in advance for the length of this post. May is Lupus Awareness Month, and as someone living with this chronic illness I think it’s important that I educate those around me. Before I get into my personal story here is an overview for those who may not know a lot about Lupus, and how it affects the human body.
What is Lupus?
According to the Lupus Foundation of America, Lupus is a chronic autoimmune disease that can damage any part of the body (skin, joints, and/or organs). It is an inflammatory condition that occurs when the immune system attacks its own tissues. “Chronic” means that symptoms are not temporary, lasting over months and sometimes even years. Lupus is autoimmune, meaning the immune system cannot differentiate between foreign invaders (viruses, bacteria, and germs) and the body’s healthy tissues. This results in autoantibodies that attack and cause inflammation, pain, and damage in various parts of the body.
Things you should know:
Lupus is NOT contagious, in any way (I’ve gotten that question so many times).
Lupus is NOT like, or related to, HIV or AIDS. In Lupus the immune system is over active while in HIV/AIDS the immune system is under active.
Lupus can range from mild to life threatening. If managed well, most people can live a full life.
Women of color are 2 to 3 times more likely to develop Lupus.
On average, it takes 6 years to be diagnosed from the time symptoms are first noticed.
Seventy-three percent of Americans between 18 – 34 years of age have never heard about Lupus or know very little beyond the name.
Men also develop Lupus (many people really think they don’t).
I had just come back from a sun and fun filled vacation in the Dominican Republic, for my 22nd birthday. A week or two later I noticed my body getting really stiff. My hands and feet were swelling, joints hurting, and muscles aching. Have you ever gone to the gym and over worked yourself; when you wake up the next day you’re entire body is in pain? Imagine that feeling, multiply it by 100 (ok maybe 50) and add 5 to 6 days of that to your life. That is what I was going through. I had no idea what was wrong with me and told myself that I must of come down with a bad case of the flu. Some days were worse than others. On the mild days I would tell myself that I was getting better. I had taken time off from school that semester, and was lucky enough to have many days to rest. Going to work was hard but at least it was part time. The few days a week I worked I could push through the pain and show up. It was now October, and my friends and I planned to head to D.C. to attend Howard University’s Homecoming weekend festivities. I was still experiencing some forms of pain but my stubbornness wouldn’t allow me to miss a weekend of fun. I down played my agony and headed to D.C. with my friends. Most of them knew I was sick but didn’t know how bad it was. They expected me to push through it for the weekend. I had the same mindset.
Overview of my symptoms our first day in D.C.
Bad knee pains (excruciating to say the least. It was extremely hard to sit or stand up)
Swollen hands (it felt like they were throbbing and ready to bursts)
Both arms were locked up ( meaning I couldn’t extend either arm past a 90 degree angle. They formed an L at my side. It interfered with everything I tried to do including getting dressed, reaching for things that weren’t right in front of me, and pulling a door open. It was embarrassing. I tried to keep my arms and hands moving, constantly fidgeting to keep people from realizing that my arms were stuck like that)
My muscles were tired, achy, and weak. I had to mentally concentrate on keeping my legs and arms from shaking.
I was in horrible condition and had no business being so far from home. That night we attended a party. That’s when things got significantly worst. When we arrived at the party I tried my best to focus on anything other than how I was feeling. Thanks to one of our friends, we were in V.I.P. and I found a nice comfy couch to sit on. I kept telling myself that if I stayed seated I could get through the rest of the night. The party filled up, the music was pumping, and vibes were flowing. I couldn’t help myself but to get up and dance (the little I could move). I wanted to enjoy myself despite how I was feeling. Twenty minutes in and I felt like I was about to pass out. I drank some water and munched on some crackers. It didn’t help (I don’t know why I thought it would). The pain was becoming unbearable and I was starting to get chills. Did I mention that I had on heels and a little skirt (it was freezing outside). I decided it was time for me to leave and headed back to the hotel. I spent the rest of the trip in bed with a fever and in a wave of pain that I’d never experienced before. I had to talk my mom out of driving from NYC to D.C. to get me. We were leaving in a day and I told her I could stick it out. I would just stay in bed. I remember dragging myself to the store, a block away, to keep from starving (literally). Everyone was out and I needed food, bad. The next day we headed back to NYC.
My parents were worried and my mom made sure to berate me about my stupid decision to go to D.C. She was concerned and I didn’t blame her. She was right. I put fun before my health. The weeks that followed consisted of a series of doctor appointments, needles, tests, and more pain. Doctor’s couldn’t figure out what was wrong. I started getting nervous (though I tried my best not to show it and joked about the whole thing every chance I got. Truth: I was terrified). I kept thinking, “Great Quin, leave it up to you to get some rare disease that no one can figure out.” I felt like I was watching the entire story unfold in a movie. I wondered how my story would end.
After all tests were completed, I was referred to a Rheumatologist who diagnosed me with Sjogren’s Syndrome. I wondered, “What in the hell is that!” 🤔
Similar to Lupus, Sjogren’s is an immune system disorder. I started doing tons of research. I was told I would have to change many things in my life – giving up on certain activities, my diet, etc. I was sad. Why couldn’t this just be a bad case of the flu or some other (curable) sickness? Give me some medicine, prescribe days of rest, and Quin is back to new. Unfortunately reality hit me hard. Although the Rheumatologist was quick to diagnosis me, my mother and I weren’t sold. There were still some symptoms that my doctor couldn’t explain. We decided to get a second opinion. My aunt referred me to another Rheumatologist who had a great reputation.
We forwarded all my records and test results to the new doctor. When we arrived for the appointment he went through all the basics. Asked me a bunch of questions, checked all the things doctors check, and then just blurted it out. “You have Lupus.” No warning, no buffer, no pep talk. I think my mom had a mini heart attack when those words left his mouth, but she didn’t show it. I think she didn’t want her reaction to freak me out. She had to be strong for me. We both just sat there starring at him, not knowing what to say. I’m pretty sure my mouth was open in shock. I didn’t know how to feel. I wasn’t too familiar with Lupus but I knew enough to allow panic to set in my heart, and tears to fill my eyes. My first thought was, “I don’t wanna die.” 😩😩😩
In that moment, it didn’t dawn on me how those three little words (“You have Lupus”) would come to dictate the rest of my life. This included my mental state, self-esteem, career, personality, friendships/relationships, and so much more. I slipped into a dark period of depression (other things also contributed) and developed an intense fear of dying. Going through all of that changed me, forcing me to deal with life head on. I refused to let Lupus ruin my life.
Her are some videos to watch, to learn more about Lupus and what it’s like dealing with it.
Living with Lupus: Living with Lupus
Miss Universe Jamaica: Living with lupus: Miss Universe Jamaica finalist tells all
Lupus Foundation of America: https://www.youtube.com/user/LupusFoundation/videos
Nick Cannon and Lupus: Nick Cannon talks about Living with Lupus
Click here for Living With Lupus: Part 2 where I get more detailed about how these things affected me, overcoming those obstacles, and how I deal with Lupus day to day.