The months following my lupus diagnosis were the hardest in my 22 years of life to date. It wasn’t just a matter of coming to terms with my illness, it also was having to completely revamp my perspective on life and accept that my reality had been altered beyond repair.
In the space of six months, I reinvented myself at least once a month. It was like being in an out-of-control car with faulty brakes. I couldn’t approach an obstacle with caution, slowing to a stop to calmly assess the situation. I had to crash head-on and break down. In retrospect, this was the hardest way of dealing with my situation, and while I wouldn’t do it again — or recommended it to anyone else for that matter — it has provided me with a few words of wisdom that, if given the chance, I’d pass on to my struggling past self.
Here are the lessons I’d share with my newly diagnosed self:
1. Prednisolone is not forever
There is no doubt in my mind that prednisolone is a large part of the reason that I’m on my way to remission. But I’d be lying if I didn’t admit that the corticosteroid medication was the bane of my existence for the better part of a year. Some nights it had me up at 3 a.m. scrubbing the family fridge, one evening it saw me eat SEVEN tacos, one after the other, and it had me starting fights every other day over every little thing. High-dose prednisolone is known for these kinds of behavior, and anyone who’s ever taken it long-term has stories just like mine. But what’s important to remember is that no matter how bad the present is this too will pass.
2. Admitting you’re fatigued and need rest is not a sign of weakness. It’s self-care — and it’s vital!
Fatigue is something I will probably struggle with in one form or another for the rest of my life. While these days I know the importance of listening to my body and resting when needed, there once was a time where I flat-out refused. Being in my early 20s, I couldn’t let go of the idea of youth; this was the part of my life that should’ve been the most energetic — and more than anything I desperately wanted it to be! It took many days of consequences to realize just how important it is for me to truly listen to my body and rest. Pushing through the fatigue might work for today, but that victory will be short-lived and have repercussions. Admitting I’m tired because of something I can’t control is not a sign of weakness, it’s a sign of maturity and self-care. What I’m saying to my body is, “I hear you, I respect your needs, and I love you enough to listen.”
3. To talk is to heal
I come from a long line of talkers. Both of my parents love to talk and just like me sometimes have the tendency to overshare! While this isn’t always a good thing, it was a positive when it came to being diagnosed with lupus. Having the ability to speak openly and honestly about my chronic illness is a fundamental part of my acceptance. Releasing the anguish, grief, and hurt out of my head and into the world not only helped me raise awareness about my condition, it also brought me a long way in my process of self-healing. As humans we are social creatures, we want to talk, to be loved, and to be accepted. The first step toward all of that is telling your story to the world. When you open your soul up, you let yourself heal.
4. Be patient — it will all amount to something wonderful one day!
In the wake of good news, this is my most recently learned lesson – but it was also the hardest to learn by far. It took two years for me to see positive results. These were two years of frustration, two years of numerous medications every day, two years of never knowing if I was ever getting better. And then it finally happened, every breakdown, every time I had to reinvent myself because of lupus, it all finally paid off. Good things are on their way to you if you’ll just give all that medicine and good energy enough time to make a difference!
If you could share one thing with yourself at your time of diagnosis, what would it be? Let me know in the comments below!
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.