When I got divorced many years ago, I had to figure out who I was as a single woman. But at that tough time, I had to figure out only that one aspect of who I was. When I got downsized prior to starting my own business, I was at another crossroads. Again, I had to figure out who I was after being unemployed. However, when I was diagnosed with lupus, it stole everything all at once.
I find myself retreating into myself because it is quite overwhelming to have one major life event happen. You are forced to figure out who you are because of it, but when that major event takes it all– how do you decide what gets sorted out first? It’s all-important, and you simply don’t have the energy (or the mental capacity) to really want to do it all over again. People who are not affected in this way can’t relate. They expect you to just keep going. But the question is, going toward what?
Prior to diagnosis, I sold homes in Florida. I was extremely active in my community, and I was very social. I enjoyed networking, and would eat out at great restaurants several times a week. I also was quite active on social media, sharing via a fashion blog and a YouTube channel. I also am the mother of two (fortunately, lupus came along mere months after my daughter moved away from home for good). This means that I didn’t have to try to keep up with small children, but I still had family gatherings that were important.
My nickname is The Hurricane In Heels, and I no longer own any heels. I no longer have energy to do a lot of what I once could. I am not supposed to be out in the sun, so I no longer could enjoy the middle of the day selling homes in Florida. My muscles have diminished to the point of needing physical therapy, so I am not able to exercise in the manner I used to enjoy. I no longer can work the hours I once could, as I often feel exhausted and must nap throughout the day.
In Alice in Wonderland, Alice’s response to the caterpillar perfectly captures how I feel about my life since being diagnosed with lupus a little more than a year ago. The decisions that I made were for my health, they were not for my soul, so to speak. Now that I am finally settling into this new being and accepting some things, I am not sure what to tackle first in response to the question of “Who am I?” The past year, I have been in survival mode and all the selections have been about getting good healthcare at a truly affordable price.
Lupus is what I now have to consider whenever I make decisions. For example, I was invited to an event that I had a high interest in. I woke up just fine, but as the day wore on, pain settled in, so I had to cancel.
I would love to date, but a woman I was speaking with mentioned that I shouldn’t share my diagnosis right away. This is a luxury I cannot afford when I am averaging a hospital stay every six months. (Not to mention living with symptoms of high pain, high fatigue and more.) Some people have said to me that I talk about my illness too much. Maybe I talk about it because it truly is involved in every single decision I make. It’s like the crying baby on my hip that I can’t find a babysitter for.
I am a joy junkie, I know that things always work out in the end, and they work out for the best. But I would be lying if I said that trying to prioritize what I should figure out first is easy.
Since my diagnosis I have moved to a new country. I have started a new career, and made new friends. Thanks to lupus, I also have a new body, new energy, new health issues, and new challenges to try to figure out. And they say stress is a trigger!
I laugh, lupus IS stress! I will take the challenges one at a time, one day at a time and pray that at some point, I will be able to say, this is who I am. Until then, as a fairly new lupus warrior. I will continue to battle it out and let those who come behind me know that it’s not always easy, but I know we have better days ahead.
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.