So, how does having a rare neuroimmune disorder impact care relationships?

After reading these articles, I feel that there are an infinite amount of ways relationships can become impacted by rare neuroimmune disorders. The adaptations to one’s new life that occurs in care relationships post-diagnosis can be positive or negative. 

Angela Jackson wrote the following of how her care relationships changed:

“I’m thankful for my loving, caring, supportive, and outstanding husband Bo Jackson. He stayed at the hospital for 31 days. No words can explain all that he’s done for me. I’m thankful for my daughters Candace and Courtney for their unconditional sacrifices, love, and support. I’m thankful for my brothers and sisters. I’m so grateful for our family relationship; a loving bond that can’t be broken. I’m thankful for my extended family and friends. Their visits, cards, flowers, food, phone calls, and love warmed my heart.”

In this passage, we see a deep gratitude for those in Angela’s life. She recognizes her need and dependence on those around her and is grateful for their care and consideration. Those around her have chosen to put in the effort and care for her at every level that is needed. This is a healthy social environment for the physical and mental healing that is necessary after diagnosis.

In Amanda Fortune’s piece, we see how the personal relationship between two sisters was left changed. She wrote the following:

“Throughout this time, my parents were constantly at the hospital while I visited as much as I could. Although I wanted to be by her side, I still had to attend school and care for things at home. As her sister, it was hard not to feel guilty. I would often wonder why I was healthy while my sister was in a hospital bed, paralyzed, and struggling with cognition and speaking, especially as I continued attending school events and going to my volleyball games. I also felt that none of my peers understood the severity of her condition, as these rare neuroimmune disorders are so unknown to the general public. In time, she relearned how to walk and talk and has been attack-free for three years on a preventative medication. She still struggles with the effects of this disease today, but as her sister, I help out as much as I can.”

Amanda was deeply affected by her sister’s condition, to the point where the normal sister-to-sister relationship changed to more of a care relationship. Amanda’s world began to revolve around her sister’s condition. This could be something that shut down Amanda, but it instead inspired her, as we see in the next passage:

“After experiencing the devastating results of a rare neuroimmune disorder in my own family, I learned more about healthcare and was driven to pursue medicine and research. As someone with a passion for biomedical research, I also looked for ways to involve myself in the community. The summer before my senior year of college, I received the opportunity to do an internship at Dr. Michael Levy’s lab at Massachusetts General Hospital, where I worked on a project studying genetic mutations associated with MOG antibody disease (MOGAD). I discovered a passion for research and continued to explore MOGAD and NMOSD. For my senior capstone, I wrote and presented a report on MOGAD and my experience in Dr. Levy’s neuroimmunology lab and was able to educate my fellow students and faculty at Simmons University. 

I continue to be involved in the community and hope to spread awareness of rare neuroimmune disorders through the perspective of being a sibling. I hope to use my connection to these debilitating disorders as a drive to pursue my future career as a researcher. As I have worked in fields surrounded by medical doctors and other healthcare staff, I find that very few people are aware of these rare neuroimmune disorders, and I hope to continue raising awareness of them.”

Amanda chose to pursue medicine because of her sister, which is a great sacrifice of time and energy. She continues to work on behalf of her sister, using the pain of loving someone with a rare neuroimmune disorder to further the cause. 

Similarly, Emily Woolf is a sister to someone with a rare neuroimmune disorder. She wrote the following about her relationship, and how she chose to adapt to this new life and new dynamic with her sister:

“Days of running and giggling with my sisters turned into months of hospitalizations and doctor appointments. We devoted ourselves to working as a team, each in different and ever-changing roles, to battle the illness and support one another.  

Many will listen to my story as a sibling of someone with a rare disease and think I’ve had nothing but bad luck and hardships, but I recognize the value in these lessons. I contend my misfortunes were perfectly timed to allow me to recognize my desire to help others. Looking deeper, past the pain and worry, I have developed a true passion for understanding rare diseases and assisting others through counseling and emotional support. “

Emily acknowledges the hard days, but rather than trying to separate herself from the trauma of rare neuroimmune disorders, she is choosing to care. To care is the most selfless choice someone can make, and again and again people represented here are rising to the challenge. 

However, there are others that do walk away from relationships with those with rare neuroimmune disorders, as Susanne Prüser briefly mentioned in the following passage:

“I have a wonderful husband, four sons, and a large family. All of them are very understanding and supportive. I lost a few friends who couldn’t cope with my illness and disability.”

There are many reasons people step away from relationships after one partner gets a rare neuroimmune disorder diagnosis. No one can prepare for such a life change, and it is an unfortunate reality that some people are not willing or able to care for someone with a rare neuroimmune disorder. Whether or not this is a character flaw in that person or an understandable choice someone would make is entirely based on the circumstances and personal opinions. 

As a person who grew up with a disorder rather than a person who developed a disorder midway through life, I can admit that I don’t know everything. What I do know is how afraid I felt when I’d look on the NMOSD/Devic’s disease Facebook groups and watch another marriage fall apart. I know I thought that I was never going to find a romantic partner because hey, if someone years into marriage broke up over it, who would even want to start a relationship with someone like me?

And then I fell in love with E, as I wrote in my piece:

“I think it was mostly the trauma of being sick so young that changed our dynamic, and it was hard to more healthily reconstruct any sort of boundary. 

“What if things get worse, what if I go paralyzed or blind again?” I asked him once in tears. “Will you want me then?”

“Why would I leave? I have no plans to go,” he said, pulling me into his arms. “I’m not leaving.” He was willing to take me on, and all the things that that entails. The murkiness of my future didn’t jar him.

And not only was I fortunate to find someone who was willing to weather the storm, but the way he chooses to care for me allows me to feel as though I am a real, functional human being, like I said here:

“He also presumes competence, which is a first for me. Almost everyone who knows about my condition thinks I’m too sick to do things, or treats me as though I’m fragile, which always kills my spirit. Having one person who looks at me, sees me, and lets me pick my own limits is amazing.”

To be honest, I’ve had good luck but also bad. It’s hard to find your people when you have this disorder—but it is possible. It takes time, and effort, and it takes putting yourself out there, but people will care about you. People do choose to care.

As I said, there are an infinite amount of ways relationships can become impacted by rare neuroimmune disorders. Choosing to care comes at a cost, but it is a beautiful choice. It makes us not feel alone, and it makes life worthwhile, for both the person who receives care and the one who is caring.