Who Am I?

I will probably always remember the first time (and the second time….and the third time….) I received a diagnosis that would change my life forever. Some people are born with a chronic illness and have lived with it their whole lives but for me, I went from being a relatively healthy young person to all of a sudden being smacked across the face with a chronic illness label. Receiving a chronic illness label after identifying yourself as “healthy” for so long can be a life-changing event that affects a person’s physical, emotional, and social well-being. I remember the days that I used to brag about how I had a “stomach of steel” and could eat anything without it affecting me. Now, it’s all about what foods am I going to be able to eat this month and my diet bounces all over the place like a pinball in an arcade machine. A chronic illness can cause significant changes in the way that a person views themselves and their place in the world. Take COVID for example. If I didn’t have a chronic illness diagnosis, I would still have been cautious and concerned over COVID, but I probably wouldn’t have been terrified. I probably wouldn’t have been scared that I might die just because I have a chronic illness that is managed by an immunosuppressant medication. Also, I probably wouldn’t have been as angry at society over how it has treated those of us with invisible illnesses and disabilities. There was such a callous attitude towards us that left me sick with anger so much so that I couldn’t even look at people the same way that I did pre-COVID. I was now part of a marginalized group in a way that I had never been before.

One of the most significant changes that occur after a chronic illness diagnosis is a feeling of loss of control and, quite frankly, betrayal. I felt betrayed by my own body. I felt like I had lost control of my own body. My body was not my own anymore. Granted, I wasn’t always the most healthy person. Growing up I wasn’t super interested in eating “healthy” foods (I hate to label foods in this way but I’m not always sure what to label them) and I was definitely not interested in working out or being active. As I got older I began to gain more of an interest in nutrition, vitamins and supplements, and exercise. This interest gained traction and I changed my diet to focus on more nutritious foods and I established a regular workout routine and became more active in general. Something that I still do to this day. Yet, I still developed a chronic illness. Like, what the actual F body? I gave you the good foods. I did the exercise thing. I supplemented dagnabit! And what did I get in return? Why? Just why? I vacillated between sadness and anger for some time because I just felt so out of control and I couldn’t help but feel betrayed by something I am forced to live in and forced to live with. I felt like I was no longer in charge of my own health. This loss of control can also lead to feelings of helplessness and it caused me to question my own identity and purpose in life. What is all of this for? It is very much like going through the stages of grief because you are grieving. Grieving for an identity, and possibly life, lost.

After receiving a diagnosis, I knew I needed to adjust my expectations and redefine my sense of self. One of the expectations, and personality traits, that I have defined for myself is independence. I pride myself on being a strong independent woman that is ambitious, tenacious, and gets things done. And having a chronic illness threatened all of that. The thought of having a disability and no longer being able to be the same person made me go through all of the feels. I also prided myself on not needing prescription medications because I was “healthy.” Now, I needed to adapt to a new reality, including treatments, medications, and lifestyle changes. Now, I have many prescription medications, I take a buttload of supplements (medically approved by a NP), do a ton of blood work, and go to the doctor a lot. And don’t even get me started on having to deal with insurance in the United States. That’s a rant for another blog post. This adaptation took time and led to a shift in the way that I viewed myself.

Furthermore, chronic illness can cause a person to reevaluate their priorities. Life before chronic illness was much more career-oriented. Life after chronic illness has been, well, let’s be honest, it’s still career-oriented, but I have had to find more of a balance between work and rest. For many, they may come to the realization that their previous goals and aspirations are no longer realistic, and they may need to focus on new priorities, such as managing their health and taking care of themselves. This revelation can lead to a shift in identity and a new sense of purpose. For me, it forced me to find ways to take better care of myself (not a bad thing) and to slow down so that I don’t burn out (something I’m still working on). Also, it made time more of a reality. The thought that one day this disease may take me down a path where I am too disabled to do things I want to do looms in the back of my mind. It causes a sense of pressure to get things done now and to not wait until the “time is right.” It put me in more of a “go for it” mindset because I don’t really know if I will be able to go for it later on in life. My hope is that I can continue to live life where the disease doesn’t affect my normal day-to-day but that part is uncertain because there is no guarantee. So in that regard, chronic illness gave me a kick in the pants.

Chronic illness also impacts relationships. People may feel isolated or misunderstood by friends or family who don’t fully understand the extent of their illness. They may also need to rely on others for support and may struggle with feelings of guilt or shame for being a burden. I am lucky that those who are closest to me are supportive but I know that many do not experience the same. I read many stories of people getting kicked while they're down by those they are looking to for support. I hate that people experience that. We aren’t trying to be a burden. Trust us. If we could magically cure whatever chronic illness we have we a million percent would but we can’t. So, for those of you out there who maybe don’t have a chronic illness but have a loved one who does, just be there to support us because when we don’t have support it really causes us to question our sense of self-worth and our role in society. And get your own support too! I know caregivers need support because it can be difficult to take care of someone. Find an outlet and a source of support so that you can take care of yourself in order to help the ones you love in your life.

Despite the challenges that come with a chronic illness diagnosis, many people find that they are able to adapt to a new sense of self. They may also develop a greater appreciation for life and a deeper sense of gratitude for the good things in life. Chronic illness caused me to reevaluate what was important in my life, what I wanted out of life, and how to make changes in order to head in that direction. It has also helped me to take care of myself more and to be kinder to myself. In addition, people may also discover new strengths and talents, and they may become advocates for others. It’s the biggest reason I started this blog. I wanted to be an advocate, be a voice, and to make something meaningful out of my experiences because, otherwise, it will be for nothing.

Having a chronic illness can cause significant changes in a person’s identity. It can lead to feelings of loss of control, a need to adapt to a new reality, a reevaluation of priorities, changes in relationships, and the need to discover a new sense of self. However, with time, and support, many people do find that new sense of purpose and meaning in their lives. I know I did. And, for that, I am grateful.