During your health journey, you may find yourself reconsidering who you thought you were and what you thought was possible for your life. You may feel confused about who you are and what you believe in after a transplant or a round of treatment, or you may suddenly feel uncertain about your future out of the blue during the course of your illness - even when you are in recovery.
On the other hand, you may also find that your personal beliefs and sense of purpose can help guide you navigate through what is happening.
Every person will have a different reaction to the disruption in their lives that a serious illness brings, and many patients describe their feelings as constantly shifting and changing. Everything from anger to sadness to relief to confidence to fear to courage is normal.
Jasmine experienced another disruption in purpose at 28, when she learned she would need a bone marrow transplant.
"My first thought was, ‘Oh, shoot. Am I going to lose my job? Am I going to lose the life that I've been working for this whole time, missing career opportunities because of it?’ I was supposed to go for a position that I really wanted but I couldn’t apply, because I was going into transplant."
You may experience loss in a number of ways - the loss of good health, the loss of friends you make with the same or similar diagnoses, the loss of your old life, the loss of physical strength, the loss of being around your pet, the loss of things you wanted to do - such as begin college on time or become more independent from your family.
“I graduated from high school on Tuesday, and that Saturday I moved to Minnesota for my transplant,” says Angela, a 26-year-old survivor who had to have a bone marrow transplant right after graduating high school. “So I had no time to do what normal people would be doing - enjoying the summer before they go off to college. I was watching TV, seeing the football players come out on the field for the University of Michigan. And I started bawling. I'm taking a bunch of medications. I feel nauseous every day. I felt I should be a student in that student section. And that was so hard.”
One positive thing that may come from such extreme loss is a heightened appreciation for small things and an awareness of the preciousness of life.
“I've learned to enjoy every single moment you have with the people that you love the most,” says Angela. “If you have a moment just to send them a goofy text just to make them smile, do it. If you can just give them a couple more hugs before they leave for the airport, do it.”
Jasmine says, “I appreciate my life even more now. I appreciate my friends’ time when they come to see me. It means the world to me when we're all doing okay.”
Changing direction in life
Sometimes a health crisis can change your mind about your purpose in life, such as what you imagine for your future.
“When I was in my junior year in high school, I thought I was going to go to art school,” says Angela. “But after going through a bone marrow transplant, [I realized] there's a need for somebody to understand the patient side and bring it to researchers and engineers to make medical care more humanized.” So when she was ready to enroll in college, she chose biomedical engineering as her major.
Thinking about your impact
Even if you have never considered it before, you may find yourself thinking about how you can leave your mark on the world and how you want others to remember you.
Kyle, 25, found photography to be a new passion during his experience with Fanconi anemia and bone marrow transplant. “I think it has to do with me trying to leave something behind that's going to outlast my life. You can say a million words in a frame. It can mean so many different things. There’s a part of your legacy stamped into that.”
Some patients decide to explore how they can use their gifts to create a positive contribution to society. You might find yourself more interested in things like teaching, volunteering, or sharing your story with other young people who share your diagnosis.
Redefining your relationships
Sometimes it may feel difficult to connect with your loved ones, who can’t fully understand what you are going through. Your old friends may feel distant, while you grow closer to new friends who share your diagnosis. Or you may feel more connected than ever to the people you care about. You may experience a deep loneliness that changes how you feel about the people you know, or you may want to be alone, but find there is always someone around.
As a result, your understanding of how you connect to others, and where you feel like you belong, may shift.
Finding new priorities
Things you never thought about before becoming sick might become the center of your universe: transferring in and out of the hospital, taking your medications, managing pain, and exploring integrative therapies. You may find yourself focusing on these things so much that there isn’t space to dwell on what used to define your life, such as sports or hobbies.
On the other hand, some feel less burdened by “the small stuff.” You may have used to worry about how your hair looked, but if you lost the hair during treatment, that worry now feels insignificant. This can be a freeing feeling, or a painful one - or both.