When I was first diagnosed with lupus, I felt relieved. After what seemed like years of questioning of what going on with my body I finally had some answers. However, after my initial moment of feeling thankful for some clarity, I started to realize what this diagnosis really meant. Having lupus basically meant the healthy cells and tissues in my body were being attacked. My joints, kidneys, brain, lungs, and even heart could all be affected. My symptoms could get better, but worse again, and there was no cure. I quickly realized that many areas of my life would be affected by this.
The main thing I thought of? Dating. While my body might be screaming at me from the inside, I may look perfectly normal on the outside. Lupus is often times coined the “invisible illness” because symptoms aren’t readily visible. Sometimes people have a hard time understanding a chronic illness like lupus because they feel as though I “look” fine, but I am acting incapable. I may have extreme fatigue that makes it hard to walk through the grocery store, but I am often faced with insensitive reactions, many times from those I am dating or in relationships with.
When I meet someone, I don’t want to put everything on the table on a first date. “Hi, nice to meet you, I have a chronic illness that sometimes keeps me in bed for days,” isn’t my way of getting to know someone. I know others who have lupus may disagree with this approach, but I would rather someone get to know my personality rather than judge me based on my illness. The downfall in this scenario is when I do reveal my illness, sometimes I get accused of being dramatic, lazy, or even a liar. I feel like I have yet to meet someone who fully accepts me for myself, and my lupus. I still have faith that I will meet that Prince Charming someday, even if I have to kiss a few more frogs first.
If you or someone you love is struggling to manage lupus symptoms, you may be eligible to participate in a research study at New England Research Associates. Qualified participants are closely evaluated by board-certified physicians and other medical professionals, and may even gain access to new treatments before they are available to the general public. Compensation is also available for time and travel expense. To learn more, click HERE.