IgAN may have changed my life, but it didn’t change me
My diagnosis forced me on a path I never would have expected for myself
Written by |
I knew something was wrong years before I was diagnosed with IgA nephropathy (IgAN). I was constantly exhausted, my blood pressure was slowly creeping higher, and I was starting to feel strangely foggy and disconnected. I was working as a hairstylist at the time, pulling 12-hour days, six days a week — even more during wedding season, prom season, and holidays. I was busy, and my career was thriving.
I was happy to be working in such a fun and creative role, something I was good at and truly enjoyed. The beauty industry allowed me to express myself artistically and interact with people all day long. I couldn’t have found a better fit.
Despite my noticeably worsening health, I didn’t feel inclined to visit a doctor. My symptoms were too vague, and I lacked the patience and the health insurance coverage to dive into the bottomless pit of medical investigations I knew I would be subjected to. I kept shrugging it off, blaming my lifestyle and packed schedule, convincing myself that I’d deal with it if it ever started disrupting my life and career. Of course, it eventually did.
I’d get home after a long day and try to unwind with a little reality TV, except I wouldn’t be able to get up from the couch after I sat down. There were nights I had to crawl on my hands and knees to the bed or the bathroom. I began surviving on takeout, too exhausted to prepare meals at home. I’d have to lean against the wall while working on my clients to make it through the day.
At some point, I stopped being able to make it through the day at all. Between the dizziness and the joint pain, I started cutting back my hours and leaving early, until it became unsustainable. I was forced to make the difficult decision to leave my career as a hairstylist and find a desk job. At first, I was excited to try something new, but I got burnt out quickly with the monotony of corporate life. Still, the slower pace bought me a couple more years of time to ignore my worsening health.
Moving forward post-diagnosis
Then, IgAN snuck up suddenly after years of going undetected beneath the surface of nonspecific, seemingly random symptoms. Within six months of my first doctor visit, I had a shiny new rare disease diagnosis. I felt an overwhelming sense of relief. Now I finally had an explanation for everything I’d been experiencing.
At the same time, I felt betrayed by my body. The diagnosis made everything real and unavoidable, and I resented that. I was angry, afraid, and grieving the life I was forced to let go of. This is not what I wanted. I didn’t sign up for this. It’s not fair. And yet, I have no choice in the matter, so I may as well make the best of it.
I tried to be very realistic about my diagnosis from the beginning. I took my nephrologist at his word when he told me there was no way to predict how my disease would progress. I believed him when he said the best thing I could do was focus on the things I could actually control, like taking my medication and following up with him regularly. I promised myself I would not let kidney disease boss me around or make me miserable.
I definitely have bad days. I grumble about going into the office and sitting around all day, shooting off emails and answering phone calls. I daydream about the different hair colors and styles I’d love to experiment with. I miss who I used to be all those years ago. IgAN forced me on a path I never would have expected for myself. It made me rethink my entire life and discover parts of myself I didn’t know existed.
I had to let go of the assumptions I’d made about my future and embrace the uncomfortable reality of not knowing what the next few years will look like. I hate it, and I’m still mourning what I thought my life would be. I don’t know if I’ll ever stop mourning it, but maybe that’s what makes me keep going.
I can’t control what IgAN does to my kidneys, but I can control how I manage the uncertainty. Every day, I keep my promise to myself to not let IgAN rule my life. I know the future isn’t hopeless because I’m still shaping it.
Note: IgA Nephropathy News 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 IgA Nephropathy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgA nephropathy.
