My 10-Year Lupus Diagnosis Anniversary
Last updated: February 2023
This is my 10th anniversary of being diagnosed with lupus, and I am so happy I made it this far. Being diagnosed with lupus at age 17 was a lot for me to deal with at a young age.
Adjusting to life with lupus
I could not understand why I had to change so many things about myself when I was younger. For example, I began taking medicine I never had to take all my life, changing my diet and lifestyle. It was hard to accept that I would have this autoimmune disease for the rest of my life. At that age, I wanted to be young and carefree. I did not understand that I could not overwork or overstress myself because all that played a part in my getting sick.
Support from friends and family
I had one doctor who told my husband each visit that he needed to take care of me and that I would need him to take care of me. I never understood what he meant until I got sick. Over the last few years, my husband learned to care for and love me the right way. I never felt like a burden to him because he ensured I never felt that way. He never talked to me as if I was a burden. He mostly apologized that he could do nothing to help me. I felt as if he started to understand how bad the disease could get after the first time I got sick.
Losing friends due to lupus
Along the way, and even now, I have come to realize some people do not fit into my circle or circumstances because they were not meant to be there. Some people will not understand your disease and might even disconnect from you. Now, I have a better understanding of people who have the same disease as me.
One person I used to know compared my disease to high blood pressure or something as simple as a skin rash because they knew someone who had something similar to those issues. Ultimately, it turned out they had not experienced anything as I had. I have had managers at jobs that did not understand because they had a family member with it, but it was not as severe as mine. It hurts for a manager to tell you to make sure you can work your shift when you don't even know what the outcome of the shift will be. Of course, you will go in to work, because you need the money. But, they will never understand the situation if you are sick and need to leave.
I believe in my current self
After my second kidney failure, I learned to love and heal myself mentally and physically. My husband has never been in a rush for me to return to work because he knows how bad my condition can get. Each time I was able to get pregnant, he was happy, and he told me he appreciated that my body could handle carrying a baby for him.
So the saying goes, "forgive your younger self, believe in your current self, and create your future self."
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?