How to Be a Good Friend to Someone Living With a Rare Disease

When I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is empathetic and flexible.

In encounters with people who did not have these characteristics, it was difficult for me to maintain friendships with them. These experiences gave truth to the phrase about being "a glutton for punishment."

Chronic illness can significantly impact a person's physical and mental health, and often, this will occur hand in hand. It's difficult not to struggle, at least at times, with mental health when dealing with chronic illness symptoms, the stress of medical expenses, and feelings such as frustration and isolation due to one's illness being a rare disease.

Rare disease friendships require empathy

All relationships require empathy for a true connection to be present. However, a friendship with someone with a rare disease won't last at all without the presence of empathy.

How many of us already struggle with others not believing our health experiences, including doctors? Or someone not understanding why our symptoms or feelings about our health are bothersome? I think it's safe to say that we've all encountered at least 1 person who hasn't believed us or has dismissed or minimized our experiences.

This can be particularly painful when it comes from someone who we consider ourselves close to, someone we feel safe with to share our struggles and experiences.

Empathy and emotional support go hand in hand

I've had many interpersonal relationships with people I turned to for support but instead was met with judgment, dismissal, minimization, etc.

Each time, I felt even more alone than I did before. I felt misunderstood and unable to turn to that person for any type of emotional support. It was as though my world became darker, shrinking more and more with each encounter.

When we aren't able to empathize with another's experience, we can't provide emotional support or understanding to that person. Our relationship can become constrained, and we may begin to experience negative attachments such as resentment for the lack of support or understanding provided. A sure way to destroy a relationship is through unresolved resentments, which act as a slow source of suffocation to the remnants of a friendship.

Flexibility complements empathy

The other characteristic I require in my interpersonal relationships is flexibility, which is complementary to empathy. How often do we have to unexpectedly cancel plans or even arrive late to scheduled plans sometimes due to our rare diseases? Living with a rare disease means our worlds become full of medical appointments, tests, procedures, and attempts to manage symptoms that sometimes flare; anything can change with a moment's notice.

While I prefer a lot of structure to my routines with plenty of notice for planning, my rare diseases require me to be more flexible with myself than I always prefer. Similarly, my rare diseases also require the people in my life to understand and be flexible with me. Most of the time, this means a willingness to reschedule plans with me altogether, while other times, it only means changing the time or venue.

I'm able to maintain enough of a structured routine to keep my symptoms in check most of the time so that I can participate in planned activities, but my body doesn't always listen to what I want it to do. So, symptoms will flare or change from their normalcy, and my plans must change to adapt to variances.

Showing myself the same behaviors I expect from others

While empathy and flexibility are the top 2 characteristics I need in my interpersonal relationships, I also require these from myself. Not only do I need to practice empathy and flexibility with my loved ones, but I also need to provide it to myself. I am not doing myself a favor if I am unable to show myself understanding toward my needs and the flexibility to adapt to change.

Ultimately, empathy and flexibility are ways to show care, concern, and love. May we each strive to practice and model such friendly characteristics in all interactions – with ourselves, one another, and the world.