Before I was diagnosed, I prided myself on working well under pressure. I often said I performed better that way. But while I thought this was the case, clearly my body thought differently. I’ve made it through many stressful things — coming from an inner city upbringing, being a Desert Storm veteran, raising two kids on my own, and building a successful business. Not only did I persevere through these challenges, I thought I had done so with flying colors.
At a time in my life where everything seemed to finally be calming down, I got this insane diagnosis. I was told it had no known cause, but stress could be a trigger. I had no idea what the doctors meant by “trigger,” and was quick to say I had no stress. However, I have come to recognize that my body may see certain things as stressful, even if my mind considers these events just part of life.
Recently, my limbs and my vision were affected. I went to the doctor and was told to see a neurologist. The concern was that the blood supply was not getting to my brain properly, and in an effort to save itself, my brain was shutting my body down. This news was even scarier than my lupus diagnosis. Talk about stressful!
I did my best to only think good thoughts, but the idea that my brain was turning my body off got the better of me. After a visit to the neurologist where more tests were ordered, including an MRI/MRA, we learned the situation was much better than initially thought. But something else that had been bothering me came to light.
The technician asked me about my hair. I have been wearing a wig for quite some time, but underneath I had a ton of my own hair — hair that I would shampoo each week, braid down, and then place my wig over. During shampoos, however, my hair had begun to fall out in clumps. Hair loss is a symptom of lupus.
She asked me to remove my wig, and although this was something that I’d normally refuse to do, I obliged because of the seriousness of the situation. I’d gotten to the point where I didn’t want to shampoo, because I was afraid of losing more hair. While sitting as the technician helped me put my wig back on without a mirror, I felt embarrassed and I didn’t like it.
As I waited for the test results, I made a decision that if I could control something that was causing me stress, I would get rid of it. It didn’t matter what it was, I would rid my life of it.
So back home, I took out the scissors and cut off all the hair underneath my wig. I decided to no longer wear a wig, either. This was a decision that I could have gone back on — I could change my mind.
This decision impacted me in other ways, so fear set in. I still kept my head covered, but instead of a wig, I started wearing head-wraps. They were fun at first, but then they too began to feel cumbersome. The head-wraps sometimes made me feel too hot, and I worried they would fall off or come undone. They became a new type of stress.
Finally, I decided that I would not allow stress or fear to win, and went to the salon and told the lady to shave it off. I have made it my mission not to give lupus an inch — it will have to take from me what it wants. As long as I can control a situation, I will.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This 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. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.