What I Would Do Differently: Advice For The Newly Diagnosed

Feeling overwhelmed after my IgAN diagnosis

When I first learned I have IgAN, I felt completely overwhelmed. Not only had I received a life-changing diagnosis, but I was also learning a whole lot of new information all at once. Suddenly, everyone in my life had health advice for me. People were telling me what to eat, what supplements to take, which medications to ask my doctor for, and what kind of tea their aunt drinks to help with her kidney stones.

It was hard to make sense of everything and know who to listen to. Now that I've been living with this disease for a few years, I hope my experiences can help those who are newly diagnosed.

Sharing my IgA nephropathy diagnosis too soon

One of the first things I wish I had done differently is not talk about my diagnosis with certain people until I really had a grip on what was going on. I was quick to share about my IgA nephropathy with family members and unfortunately found myself comforting many of them about what I was still trying to process.

I felt obligated to share the news with my loved ones, but it led to some uncomfortable conversations that I could have predicted but still wasn't prepared for. If I could do it all over again, I would take some time to go to therapy, settle into my new routine and lifestyle, and find my new "normal" before telling everyone about my diagnosis.

While it's important to have trusted people in your corner who can provide support, it's also important to have boundaries! I shared openly before I was truly ready, and I hope others can avoid the same mistake.

Relying less on the internet with IgAN

Another thing I would change is relying less on the internet. I wish I would have written down all the questions I wanted to look up online and asked my nephrologist instead. In the early days of living with IgAN, I found myself on online forums and social media pretty frequently, reading everyone's horror stories about unhelpful doctors and expensive medications that didn't work.

The reality of living with IgAN is a lot less scary than the internet would have you believe, and I wish I'd given myself an opportunity to live my life without everyone else's negative experiences looming over me. IgAN is a serious thing to deal with, and I don't want to minimize it, but I also don't want to live in fear.

The internet is full of opinions, and some of them are not so helpful. Now, I try to get my information from trusted sources like the IgA Nephropathy Foundation and NephCure instead of social media comments.

Being kinder to myself while living with IgAN

Finally, and maybe most importantly, if I could restart from day 1 of my IgA nephropathy journey, I would be so much kinder and more forgiving with myself. I put so much pressure on myself to be a perfect patient and to learn everything about IgAN right away. I went completely overboard with dietary restrictions and research and accidentally crushed myself under the weight of my own expectations.

When you're dealing with IgAN, there is no way to do everything right. The best thing we can do for ourselves is focus on what we can control, like nourishment and hydration, exercise, and rest. Even with the things in our control, it's normal to have off days.

Remember, no one is perfect, and just like you can't be sure that your kidneys will stay healthy, there is absolutely no guarantee that your disease will get worse. I think it's healthiest to take things a day at a time and do our best, accepting that some days will be better than others.

What living with IgAN has taught me

Living with IgAN has gotten much easier as time has passed. I'm more careful with what I choose to share, I guard my peace, and I try to live positively while still honoring the full range of emotions that comes with a chronic disease diagnosis.

These valuable lessons I've learned have carried over into other parts of my life, too. IgAN has changed my life in so many ways, and oddly enough some of those changes have been for the better.

I'm still a work in progress and have lots more to learn as I continue my journey with this diagnosis, but I am grateful to have had these opportunities to grow and I hope that others are able to find the same positivity in their experiences with IgAN