Living With Lupus

Lupus: a chronic, autoimmune disease that can cause inflammation and pain in any part of your body as your immune system attacks healthy tissue

Third Times A Charm, I Hope

“The Good Doctor”, doctor number five, walked into the room. He reminded me of doctor number two, who was supposed to be “the good doctor.”

He was white, young, short, and medium built with rectangle framed glasses sitting on the bridge of his nose. No different than the last doctor, except he gave off more of an “I have my shit together” vibe. As he stuck his hand out and said, “Good morning Ms. Hopson, nice to meet you I am Doctor Thompson,” I was reluctant to mimic the same warm response because none of the previous doctors had assured me that they could take care of me. Are you not supposed to feel some sort of relief when you are being cared for by a doctor? Are you not supposed to feel like they are listening, taking in, and addressing all of your concerns?

I’m a Well-Educated and Middle-Class Woman, So What

I was misdiagnosed with Crohn’s disease as a senior in high school.

After being diagnosed, I did a lot of research about the medications available, the type of environments that I needed to avoid, the kind of diet I needed to develop, etc. As I started to implement these changes into my life, I noticed that nothing was making me feel better, I felt worse. I went to the doctor a couple of times and told him that I was not getting better. After about the fourth time of me telling him this, he said: “well, let’s try a new medicine.” When he told me about this new medicine, I remembered hearing about it on the TV, and I just remember the side effects being worse than the benefits. After that visit, I told my mom: “I need to go to a new doctor because this man does not know what he is talking about. I know my body.” The next week that is just what I did. The “Good Doctor” ran some tests and did some procedures, and within another week, he said: “Alyssa, I know why you are not feeling better, you do not have Crohn’s disease, so Crohn’s disease medicine is not going to help you. You have Lupus.” I immediately stopped the old medicine, started the new medication, and I have felt like a new person ever since.

At this point in my life, I understand how hard it is to receive something so basically fundamental to life, quality medical assistance.

For me, a well off, young, black girl, it was hard to get the care that I needed; therefore, I know that for those black women not as fortunate as me, they simply give up on receiving the care that they need and deserve. I had the option to go to multiple doctors until I felt I was being listened too, but not everyone has access to that.

Mental Health Toll

For so long, I always questioned, “Why me, Lord? What did I do to deserve to have to put up with this?” as no one else in my family has this condition.

There were many sleepless, crying nights as I thought about how this condition might affect me now and long term. As I learned more about my condition, I learned that a lot of people who have autoimmune disorders often experience depression-like symptoms.  They make you want to just lay around all day, not want to go out with your friends and loved ones, eat all the time, and sometimes you want to give up. Having to change your lifestyle or be more conscious of how your body might respond to things that you do compared to your peers is very defeating. Also, medications are strong and have very real side effects. But after meeting “The Good Doctor”, I was able to get on the right track and get my life back together, which has been a blessing.

I Found the One, For Us

Being frustrated with the medical system, I voiced to “The Good Doctor” that as a black woman, it is hard to be provided with the best care possible because no one listens to us.

After I explained my concerns to him, he commended me for voicing these on our first meet up. Thankfully, I have access to the resources, but what about the women who do not have the option of trying different doctors? Because we as black women seem to be overlooked and dismissed by America’s healthcare system, I feel like it is my job and the job of other women who have access to more resources to fight for us as a whole. Not only do I talk to my healthcare professionals to try and educate them about the risk black women face in the healthcare world, but I also spread the knowledge I have about different doctors and resources to black women seeking knowledge and information. It is vital that no black woman is invisible in something that is about her; therefore, all black women must find a doctor that respects her voice and understanding of her own body.

Know your body sis! More importantly, advocate for your right to a healthy body!

Alyssa

The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.