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It’s no secret: having a chronic illness is hard. After receiving a diagnosis of an incurable disease, there can be an overwhelming amount of emotions. The worst thoughts that came to mind centered around one thing: this is never going away. Ever. (Unless one day there is a miraculous scientific discovery and a cure is found).
Suddenly, I had this huge thing to do with that started swallowing my life and I couldn’t keep up. I was meeting new doctors, learning a new treatment, and discovering more about how this disease was going to impact my future.
As a college student, I already was anxious about the future, as many students are. We chose majors in hopes that one day we would get a good job and have a wonderful career. We would spend four years pursuing a degree that would set us up for success in life.
This disease really threw a wrench in my plans.
These new emotions were so unprecedented. For months and months, it only got worse. When the cancer scares began, I started thinking I wouldn’t even be well enough to graduate. First, I heard about my low white blood cells and leukemia was a risk. Next, huge lymph nodes were found all around my body and lymphoma was a risk.
I was told that these were a possibility but there was no way of knowing until I actually got a biopsy. Those have to be planned out, executed and examined for results. These processes can take a long time. Meanwhile, I would wait in agony. I waited to hear the phone ring and be told I had cancer.
After a few physically and emotionally painful surgeries and biopsies, I was finally told that I (probably) didn’t have cancer. There were still issues, like swollen lymph nodes everywhere and an interstitial lung disease, but not cancer! I was very elated with this news, and the roller coaster of emotions mostly subsided.
But, with a disease like this, things can come up at any time, and it’s scary. So, how do I deal with the fear and uncertainty in these situations?
How to navigate fear during health scares
Six months after my diagnosis, my doctor called me saying he didn’t want to alarm me (I was alarmed) and that they had found something bad in my blood test results. He said not to panic. So, you know what I did? I panicked.
I thought I had another disease, leukemia, or something else. Was I going to die? Did I need to drop out of school?
I cried and freaked out all day, and nothing could make me feel better. My mind was racing.
According to Merriam-Webster, the definition of fear is “an unpleasant often strong emotion caused by anticipation or awareness of danger.”
Emphasis on “unpleasant” “strong” and “danger.”
Fear is not fun. And while it can feel very real, you have to remind yourself in these moments what is real. I know I have CVID. I know that can sometimes cause low blood cell counts. My disease could be the cause of it, but it also could be something else. Either way, I trust that doctors will help me get to the bottom of it.
Not only do I need to trust doctors, but I also need to trust myself. I know that I am strong and I can deal with anything, and I am not going to stop now.
When you feel a moment of fear, remind yourself of a time that you went through something really difficult and you were strong enough to come out the other side. How did you deal with that situation? How did you overcome your fears?
You know how strong you are and what you are capable of, and no one can take that away from you. There are things in life that we don’t want to do, but we know if the challenge arises, we are 100% capable. When we take a moment to recognize how amazing we are, we know we can overcome our fears and bring ourselves back down to earth. And if the fear comes true, we know that we can weather the storm.
Dealing with uncertainty about the future
Not only was I stricken with fear in these moments, but also uncertainty about my life. What if I became too ill to finish college? What if I could never have a career? Or get married? Or have kids?
I would think these horrible, poisonous thoughts over and over again. They were so trapped in my mind that I began to feel insane, isolated, and alone. I convinced myself that no one understood me and that I was on an island. Uncertainty became a dark cloud that loomed over me day and night.
These thoughts led to many painful months for me. I longed for my old self. Before my diagnosis, I was blissfully unaware of what was to come. I had no idea the pain was coming for me.
The thoughts and feelings I had were very dark, but they were very real. I think it is important to acknowledge these thoughts and also celebrate how far I have come since then.
In the last few years, I have learned a lot of lessons about uncertainty. Here are a few:
- No one knows what tomorrow will bring. Even people without chronic illnesses. No one can predict the future.
- If I don’t cherish the moment, I will miss out on some amazing things. What we know for sure is that we have the present.
- Don’t let uncertainty steal your joy. Focus on things that make you feel happy and at peace.
- Worrying about the future will change nothing.
- Stress is horrible for the mind and body.
- The future is uncertain, but it could turn out better than you ever imagined.
- Talk to a trusted person about your uncertainty. It can help you relieve your burden.
I have to remember to take my own advice, but these are things that I have learned along the way. I keep my mind open to continuously learning and improving my quality of life.
My amazing family and friends have been there for me, and confiding in them also helped me so much. If you don’t have many people in your corner, never hesitate to reach out to me! I know how important it is to have people to share my feelings with. Uncertainty is not fun, and it can bring on many other unwanted emotions!
I want to keep growing and gaining skills to thrive, even with chronic illness
The journey can be really hard, but there are many little blessings along the way. I hope that I can learn lessons from seeing others’ journeys and grow as a person throughout whatever health scares come my way.
Each disease has its own trials and tribulations, and fear and uncertainty can be very difficult emotions. I hope that you feel strong and you believe in yourself, no matter what comes your way!