Life Post- Bone Marrow Transplant – How to Find Yourself Again

Receiving a difficult diagnosis, like PNH or aplastic anemia, can be isolating and make you feel like you’re no longer yourself. This feeling can become even more pronounced after an intense treatment, such as a bone marrow transplant, making it challenging to feel like your authentic self again. Building a community can be incredibly helpful for combating these feelings of isolation (read more about joining groups here), but there are other things that can also help. 

Focusing on self-care and finding ways to reconnect with your true self can be a personal challenge but ultimately very rewarding. I personally found a variety of activities and goals that helped me rediscover myself, and below are the three that helped me the most.

Prioritizing Moving Your Body

During my recovery from treatment, there was not much emphasis placed on physical activity. While it was generally recommended to rest and conserve energy, I discovered that staying active actually helped me combat fatigue more effectively. Immediately after treatment, I began working with a physical therapist who recommended targeted at-home exercises to improve my functional movement. She also guided me to push through fatigue, as moving through tiredness was the best way to fight it. Despite the initial difficulty of exercising when fatigued, I gradually noticed an increase in energy with consistent physical activity. I felt a sense of accomplishment when I attended a spin class just six weeks after my bone marrow transplant, thanks to my dedication to walking outdoors and following my home exercise program. Engaging in physical activity helped me reconnect with my body, and I loved feeling more like myself.

Staying Healthy While Being Social

Anyone with an autoimmune disorder or weakened immune system understands the importance of staying healthy and avoiding sick individuals. A significant social change can occur after being diagnosed with a severe condition and undergoing treatment. I won’t lie; I was honestly scared to go out in public and face large crowds at first. I feared becoming ill—either to the point of hospitalization or triggering a relapse of my condition.

However, it is crucial for both your mental and physical health to leave the house and engage socially. There are smart ways to navigate social outings with a weakened immune system. I always carried hand sanitizer and remained cautious about what I touched and where I went. While I wouldn’t recommend attending a massive concert immediately after treatment, I felt safe going to stores or meeting friends for coffee during less busy times, allowing me to control my surroundings more effectively. Gradually introducing social activities significantly improved my mental health, enabling me to experience more joy and happiness while feeling less isolated from my friends.

Remaining Positive Despite the Side Effects

Whether you choose medication, infusions, or a bone marrow transplant for treatment, all options come with side effects. Sometimes, the severity of these side effects can be discouraging, as it feels like one issue is being addressed only for another to arise. It can seem like endless health concerns are always looming. Just know that you’re not alone in feeling this way. (Still deciding on a treatment plan? Read here for guidance on finding the best route for you.) I discovered that maintaining a positive perspective on these challenges made a significant difference in my ability to cope, even when side effects flared up.

I found journaling to be a valuable outlet for expressing my feelings and emotions. This practice helped me process what was happening to me, and I was able to share my story as a result. You can choose from various methods, such as keeping a daily handwritten journal, creating a photo collage, or making social media videos that reflect your experiences. Whenever I experienced a particularly bad flare-up that left me feeling sad, I would create a video sharing my situation, which also helped others who were going through similar challenges.

While everyone’s journey is unique, I hope these help you start to find yourself again post-treatment. If other things have worked for you, I’d love to hear them down in the comments!