My chronic illness is no blessing in disguise, but I know what matters now
The years since my IgAN diagnosis have been some of the happiest of my life
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I’ve always been aware of factors beyond my control; I just never considered that something outside my control might actually seriously affect me. Mysterious illnesses with complicated names have always existed, but they were something that happened to other people. When I received my immunoglobulin A neuropathy (IgAN) diagnosis, it immediately dismantled everything I believed was possible. I may as well have woken up on a different planet.
Despite this, the past few years since I was diagnosed with IgAN have been some of the happiest of my life. I don’t necessarily subscribe to the idea that an illness can be a gift or a blessing in disguise (I would give this up in a heartbeat if I had the opportunity), but I do have a deeper understanding of what’s truly important now, and that wouldn’t have happened without IgAN.
I met one of my now dearest and closest friends shortly after being diagnosed. She was one of the very first people I’ve met who has inspired me with her resilience. Hearing about her personal journey with IgAN was so jarring, and it made me upset to learn everything she had been through. It was also incredibly uplifting and empowering to see her thriving and living her best life despite what she had faced.
We’ve traveled together, we talk almost daily, and I love her parents. But I wish I had never met her. That’s not a reflection of how much I care about her, but rather of how much I wish neither of us were dealing with this disease. I would gladly give up our friendship if it meant we were both free to live in good health, and I think that’s something that only a true friend could understand. I haven’t met anyone with IgAN who I thought deserved it.
More than grateful
IgAN has also introduced me to new experiences. I might never have spoken in front of an audience, or finished my bachelor’s degree, or changed career paths were it not for IgAN. I’m happy that I discovered my love for legislative advocacy, and I hope to continue working in that space. I’m also incredibly angry that I only found out I enjoyed it because I went to ask lawmakers to support bills that benefit kidney patients.
I will admit, I was a little too comfortable in my circumstances before being diagnosed. I was fine with accepting everything that was already in front of me, even if I knew deep down it wasn’t truly making me happy. Maybe I needed a wake-up call, like a reminder that I only get one shot at this life. Even though I hate this disease, being diagnosed with IgAN provided some much-needed clarity and woke up the joie de vivre I had been missing for so long.
IgAN has brought a lot of beauty and positive change into my life. As much as I’m grateful for these things, I can never be grateful for IgAN itself. I’m appreciative of the life I have, but not the circumstances that brought me here. I honor myself by making the best of it, but I will not pretend to be happy about it.
All things considered, having IgAN really sucks. Between the mini-existential crisis every time I get my lab work done, the anxiety about disease progression, and the symptoms I deal with that are invisible to everyone but me, I sometimes get angry and exhausted. Still, I’m more grateful for my life than ever before.
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.
