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4 Questions I Wish I Asked When I Was Diagnosed With Lupus

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I’m sitting in the exam room. The room is cold and sterile. I have been waiting for the doctor to come in. It can feel like years for them to finally open that door.

I had been struggling with symptoms of lupus for over 10 years and test after test showed nothing. Finally this day was about to change everything.

The doctor opens her computer and starts scrolling through the results. “It looks here that we finally have a positive ANA. I guess we can say that you have lupus.”

Those words burned into my mind and I immediately went numb. Lupus.

So when she asked if I had any questions, I stuttered “no thanks” and watched as she started referring me to a rheumatologist and sent me on my way. Even going to the specialist, I couldn’t remember what I wanted to ask. I wrote it down and everything, but it sat in my bag as I felt so intimidated by the whole scenario.

Looking back now, I wished I would have asked some things that would have helped me since my diagnosis.

First, how is this going to affect me in the future? Am I going to be able to work? Will I lose my ability to do things because of my illness? Little did I know that I would start losing use of my legs for a short period of time.

Second, how is this going to affect me mentally? I dealt with anxiety in the past and many of the medications heightened panic attacks. Also, depression began developing because of the changes in my life.

Third, will I ever go into remission? I was given a bucket of medication and was sent on my way, leaving me thinking that I should begin feeling better. I was very wrong.

Lastly, what were the medications going to do to me? I was not clear on the side effects and was not told that I would be on these medications for the rest of my life. I developed issues like heart palpitations, gastrointestinal issues, rashes, and trouble with my memory and sleeping. If I knew what to have expected, I may have been able to ready myself.

After having lupus for a few years now, I have become a bit of an “expert” at personally researching just about every symptom and have developed a better understanding of my condition. Asking these questions would have eased a lot of my dwelling and would have made my transition much easier.

Getty photo by jacoblund

Originally published: October 20, 2018
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