We all know the stages of grief: denial, anger, bargaining, depression, and acceptance. However, grief can look very different for everyone. In this post, I am going to talk about grief as it relates to my experience with IgA nephropathy (IgAN).
Grief is not linear
When I was first diagnosed with IgAN, I had no idea the grief I would feel. Even today, I have bouts of anger and sadness. I quickly learned that it was grief that I was dealing with. I was grieving the “healthy” me. From being unable to go hiking with my son or eat my favorite foods, I was grieving the person who had energy and spent her days in an office that didn’t include a waiting room and doctors.
I remember my first Thanksgiving after being diagnosed. Since I had decided to go on a plant-based diet for my health, we planned a casual potluck with friends. They served all the traditional Thanksgiving foods, and for me, vegan Wellington. As I sat watching everyone shovel spoonfuls of gravy-covered dressing into their mouths, I could feel myself getting more and more irritated. It was like each “mmm” was pushing me closer and closer to the edge. Later that night, the grief hit, and I sat in my room alone crying.
Even now, every social event reminds me of the person I used to be, but it is not just that. It is also the illness, treatments, and medical staff. The flares and chronic pain are enough to leave me feeling defeated.
Patients often mask their symptoms, as well as their grief. It is why we hear, “But you look so healthy!” or “You are so energetic.” We don’t let our loved ones know or want to place any burden on them.
When I was still working, I would push myself to appear healthy. I did so well, I actually won the “Leader of the Year” award. I had so much passion for my career and it was a big part of my identity. Even now, 3 years after I had to leave my position to preserve my strength and health, I still find myself feeling lost. It is an ache that I’m not sure will ever go away.
Learning to live with grief
I’ve learned that the grief I feel is normal. It is natural to miss who I was, and it’s okay to be angry that my goals and plans have changed. It is okay to be sad when I wake up to another day of pain and illness. I’m allowed to deny the symptoms or bargain with doctors. It is all part of my process and living with a chronic illness.
I’ve found that the key for me is finding a way to manage the grief, so it doesn’t overcome me. At diagnosis, I was fortunate to have a doctor that insisted I start therapy. I am so thankful every day for my therapist. She allows me to say what I need to help cope. I also use meditation to help ground myself in the day to day. There are also many outlets and resources for support, from therapy to support groups and patient portals like IgAN Connect. Though you may be grieving, you are not alone.
— Judy, a person living with IgA nephropathy