Diagnosis: Grief and Acceptance

For several years, I dreamed of hearing a definitive diagnosis and getting back to my “old life.” A mystery illness had changed my life, and I saw a diagnosis as my destination. Yet, a diagnosis for me turned out to be just the very beginning of the journey, and I had no inkling of the emotional roller coaster I was about to go on.

I was only 25, and I had been holding onto the hope of feeling like my old, healthy self again. Let’s be honest: I was sick of living on antibiotics and Vick’s.

Some of you may have heard of the “Five Stages of Grief” by Elizabeth Kubler-Ross and David Kessler: Denial, Anger, Bargaining, Depression, and Acceptance. Grief expresses itself in many ways, and some people will skip stages in this grieving process or bounce back and forth between stages. Grief isn’t linear, and it never looks exactly the same on two different people. We think of the grieving process as something we do after the loss of a loved one, but in reality, I think that we go through variations of this process any time we feel a loss. After my diagnosis, I grieved for my previously healthy life, even if I couldn’t put a name to these feelings right away. Receiving a diagnosis that has no cure made me question everything about what kind of life I would live going forward. My Denial probably looked like acceptance to the outside world. When I first got diagnosed, I was (genuinely) relieved that someone could put a name to what I was experiencing, and I just kept repeating over and over again how happy I was to finally have an answer. I told people that I wasn’t afraid to take the disease head on or to start a treatment with the possibility of severe side effects. In my head, I don’t really think I was lying to anyone, but I just wasn’t allowing myself to think about it or feel anything beyond the practical steps I had to take. I made the appointments I was supposed to and focused on prepping for treatment to start.

Anger and Depression went hand in hand together for me when I finally let down the wall of my denial phase. It was a mix of fear of the unknown and being angry that this happened to me. These are the stages that really made me think hard about what I was feeling, and they forced me to put a name to it. I realized that I may very well never feel totally healthy like my old self or that I may permanently have to pace myself through the activities I wanted to do. I was angry that this diagnosis meant that I am at higher risk for developing other co-morbid conditions for the rest of my life. I worried that this higher risk of infection would complicate my ability to safely have children and if I would ever have the health and energy again to ever keep up with children. I grieved in every way possible for the loss of the future I’d always imagined for myself, and I think it is fair to say that anyone would struggle with that sudden change. I can’t tell you how many times I felt that maybe this journey would be easier if I had never been my healthy, overachiever younger self. I thought that maybe if I had never been healthy, I wouldn’t know what kind of life and health I was missing out on. Maybe that’s true, but I also realized that those kinds of thoughts would never help me move forward.

While I think some of the feelings I had during the Anger and Depression phase weren’t good for me in the long run, putting a name to it and realizing that I didn’t want to keep living in those emotions helped me see that I needed to be proactive to move forward. For me, I was only able to start moving towards my version of Acceptance when I was able to connect with other patients with similar diseases: patients in disease-related Facebook groups, a family that I met through a mutual friend, the Immune Deficiency Foundation, and another patient who was diagnosed right around the same time as me. I don’t think that a lot of these people realize how much their openness and vulnerability helped me see my future more clearly. Their experiences showed me that there is a life beyond being sick, and I found some peace through their experience.

It was also in this time frame that I remembered something that my high school Contemporary Issues teacher would repeat all the time to us: “God never gives you anything you can’t handle.” Whether you are a faithful person or not, I like to think that this phrase holds true to all of us. We are never given more than we can handle. I started repeating this phrase to myself all the time until I realized that I could either continue to wallow in self-pity, or I could use my experiences to forge an easier path forward for other patients. I needed to find a purpose. I became a co-chair for the first Walk for Primary Immunodeficiency in my state. I joined the Immune Deficiency Foundation advocacy team to put my professional insurance knowledge and experience as a patient to good use, and most recently, I started this blog to give other patients a place to feel heard and find community.

Sure, I still have to pick and choose which social events are priorities and pace myself to stay well when things get busy. My health isn’t what it once was, but following my regular treatment schedule and fueling my body with good nutrition and proper rest has allowed me to still enjoy all the best things. For 2020, I created a list of all the fun things I wanted to do in order to make the most of every day, healthy or otherwise. Some of them were as simple as finding a new show that I love to binge or trying out a new recipe at home, and some were as exciting as riding in a Mardi Gras krewe for the first time or going on a beach trip. The arrival of a global pandemic has slowed down some of these to-do items, but my list has still shown me how much I can do. There is a very sweet satisfaction every time I can cross off one of those items on my list.

I am no expert on finding your acceptance (I am still working on it every day), but if you are struggling, find someone (either in person or online) that you can connect with directly. I am generally a very private person about my emotions, and sometimes, I found that it was only my significant other who could see when I was struggling and could pull the conversation out of me to talk about it. If I could go back to give myself any advice or give advice to anyone who is struggling with a new diagnosis, it would be this: be open with someone about what you are feeling, whether that is with your loved ones or a fellow patient or a professional. Talk to someone who can be honest about the tough parts but is also a positive force around you. There are plenty of people out there that will give you pity and tell you how terrible chronic disease can be, but if you really want to make the most of the life you’ve been given, those are not your people. You only get one life, and your diagnosis can be your wake up call to savor every good moment more than you ever would have if you were perfectly healthy.

Chronically yours,

Jen