Making my invisible disease visible | IgAN Connect

Making my invisible disease visible


Chris, a person living with IgA nephropathy

There is no way to fully prepare yourself for life with IgA nephropathy (IgAN). Each day with this chronic, rare autoimmune disease brings new challenges, and I find myself, nine years after diagnosis, constantly learning how to live my best life as an IgAN patient. Recently, after comparing my labs to some articles I was reading online, I chatted with my nephrologist about what my life might look like in 10, 15, or 20 years. Before I got too far into the details, he looked at me and said, “You don’t have IgAN; you have Chris’ IgAN.” It took me a moment to understand what he meant, but as I thought about my journey thus far, I realized he was exactly right. The reality is, no two patients share the same experience, and each of our challenges, fears, prognoses, and situations are unique. Therefore, it’s essential for us to give ourselves grace and to focus on being the best patient we can for our own journey with this disease.

Learning together

I am by no means an expert on IgAN, but I have learned some valuable lessons in my journey that I wish I had known earlier. The first thing that comes to mind is the importance of protecting your mental health. During the first few years after my diagnosis, I was quite negative and anxious about my future. I withdrew from a lot of the activities and relationships that brought me joy because I didn’t have the energy to engage in them like I used to. All my energy was spent worrying, being angry, and feeling hopeless. I kept these feelings inside and pretended to be fine while I went through the motions. In my opinion, that’s one of the hardest things about IgAN; it’s an “invisible” disease for the most part. In hindsight, these were all natural reactions to such life-changing news, but I made a mistake by taking it on alone and letting it consume me. Those first few years were a lot harder than they needed to be, so I have two recommendations to get a jumpstart on protecting your mental health as an IgAN patient: be open and honest to others in your life about the way you’re feeling and join a community of IgAN patients, like the IgA Nephropathy Foundation.

The moment I began to open up to others about the way I felt both physically and emotionally, they were shocked, because I didn’t “look” sick. They began to respect the boundaries I’d set in place — like not pressuring me to drink alcohol or understanding that I might be a bit crabby when my fatigue sets in — and this alleviated some of the stress and emotional burden I felt. There is peace in knowing that you don’t have to explain yourself all the time and that the people around you understand that you’re going through something challenging. Once you master this, start doing it at work and in other settings. You’ll realize that people will respect your decisions and will be more considerate when you might need some space, a day to work from home, or time off to visit your nephrologist.

Second, get involved in the growing family of IgAN patients. I’ve had the privilege of meeting hundreds of IgAN patients since getting involved with the community, and I can honestly say it’s one of the most rewarding feelings in the world. So much of what we go through cannot be understood by those who don’t have IgAN, and it can feel isolating. When you meet another person who has shared many of the same experiences as you, there’s an instant connection. The feelings and experiences you’ve had to handle by yourself are suddenly validated, and you know that you don’t have to compensate for anything. You are understood. Today, I have a network of other patients and caregivers that I talk to whenever I need a pick me up, advice, or simply want a friend to chat with.

I know myself best

When I look at where my journey started and where I am now, one thing is clear: being your own advocate is crucial. A disease diagnosis is traumatic enough on its own, but when you couple that with the confusing medical terminology and misinformation that accompanies a rare disease, it’s normal to

  1. Understand your labs
  2. Meet with a nephrologist that has experience with IgAN
  3. Keep yourself updated on the rapidly changing landscape of IgAN

Understanding your labs is the best way to understand how your IgAN is progressing, which will allow you to focus on the unique ways your kidneys are being impacted by the disease. For example, when I was first diagnosed, I had significant amounts of protein leakage. Until I began educating myself on proteinuria and knowing where to find these numbers in my labs, I didn’t realize how to interpret this. Over the years I have decreased my protein consumption and increased my water intake significantly and it has resulted in a reduction of proteinuria. As I mentioned earlier, however, each patient is different and what works for one may not work for another. I personally found it helpful and empowering to control the aspects of my disease that I feel I have control over because so much of having IgAN is out of my control. This is why it’s crucial to partner with a nephrologist who understands IgAN. An experienced nephrologist is the best resource of information for managing IgAN, as they will analyze your labs and develop the best strategy for you to manage life with this disease. They will be able to help you make the decision of whether to begin taking treatment, which lifestyle changes you should make, and more.

In addition to knowing your labs, I recommend taking the time to research treatment options, clinical trial opportunities, and other medical advancements in the world of IgAN. In terms of being an IgAN patient, we are living in an unprecedented time. There are now FDA-approved treatments available, as well as significant amounts of research taking place. Depending on your situation, you may benefit from an existing treatment or clinical trial. It’s worth considering every option available to you, and the only way to do that is by being aware of them. Personally, watching the advancements made for IgAN over the past 9 years has made me extremely optimistic for the future, and that is an incredible feeling.

Being an IgAN patient is not easy, but there are steps you can take to positively impact your mental and physical health despite the challenges. It is crucial to remember that no two experiences with this disease are alike, so we must be our own advocates and take the time to understand our diseases and the way they make us feel. One thing is certain: your journey with IgAN is not meant to be made alone.

IgAN Connect is here to help you. Discover an overview of potential treatment options that you might want to explore with your nephrologist.