Why I like to keep my kidney talk in kidney spaces
Finding a healthy, productive outlet to discuss IgAN has been a game changer
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Like most people with IgA nephropathy (IgAN), you can’t tell just by looking at me that there’s something wrong with my health. I’m usually able to go about my daily life without much disruption, and I’m able to blend in with everyone else and not bring too much attention to myself or my illness, which is great.
I tend to share information about my diagnosis on a need-to-know basis. Most of the people I work with don’t know I have a rare disease, and I prefer to keep it that way. My boss knows the basics, just enough to understand why I may request accommodations from time to time. Co-workers know the bare minimum, which is usually nothing at all. In a few rare instances, I have spoken with co-workers I trust about IgAN when the topic comes up naturally. These conversations are usually brief, and I only answer the questions I’m comfortable with.
Personal health, personal business
My health is my personal business, and I value my privacy. Not everyone needs to know what I’m experiencing. In a way, it’s like living a double life. I’m active and outspoken in the kidney community, I take advocacy very seriously, and I volunteer a lot of my free time toward empowering other patients and sharing my story to help shape the future of kidney care. But in “real” life — at work, at home, and in my day-to-day — IgAN is rarely brought up.
Though I’m an open book online, I don’t think most people are particularly interested in hearing about my health, so I just don’t talk about it unless someone asks. I fear being someone who makes being chronically ill a feature of their personality, but this disease isn’t something I asked for or wanted, so my goal is to give it as little of my attention as possible.
Of course, I take my medication. I go to the doctor. And I think carefully about how my decisions may affect my kidney health. But there’s a difference between being mindful and being obsessive. I have the tendency to form unhealthy thought patterns when I start to overthink my health, so it’s easier to stick to my routine and spend the rest of my time simply living.
Life can be hard enough without the added layer of chronic illness. It’s good to give myself a mental break and let IgAN take a back seat when I’m not actively dealing with a health concern. I’ve found that the simplest way to do that is to keep kidney talk in kidney spaces, where people already understand what I’m going through. The “kidney world” is a safe space outside of therapy, where I can talk about everything openly. When I’m talking to healthcare professionals and other patients, it’s a weight off my shoulders; I don’t have to navigate unwanted opinions, explain myself, worry about being judged, or calm anyone’s concerns. I can simply be a person who happens to have IgAN.
Finding a healthy and productive outlet to discuss IgAN has been a game changer for me, and I can choose when and where to give it time and energy. I was a whole person before I was diagnosed with IgAN, and I’m still a whole person now. Whenever I want to be upset about being sick, I know IgAN will be there. The rest of the time, I am free to live my life.
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.
