Two friends having coffee and a cupcake. We cannot see their faces but we see from hand positioning they are talking and connecting.

How I've Found True Friendship Living With a Rare Disease


When I think of friendship, I usually think of the people in my life who have seen me through thick and thin. The people who perhaps I have grown up with, gone to school or university with, traveled with, played sports with or worked with for years. I think of the people who I hope will always be there for me.

The truth is friends often come and go. Sometimes that’s because we have relocated or had a difference in opinion or have just naturally grown apart. We grow up, we change, we get married, have kids and often find new friends. The memories of special friendships stay with me though, as a photograph album in my mind to look back when I want to be reminded of happy times spent together.

Sometimes, health issues can remove us from a “normal” social life that is often necessary to hold friendships together. Sometimes health can get so complex, friends no longer know what to say or what to ask. Maybe they feel so distressed about what is happening to us it becomes easier to slowly let the friendship slip. We might think it sounds terrible but I believe it’s also understandable.

Chronic disease changes everything, for everyone. Just like other life changing moments can do.

images-9

I’ve learned that as new life evolves for a person with chronic disease — around medical appointments and accepting new ways of living with a disability — some beautiful friends remain but more than likely, new friendships will emerge. If we let them.

As someone with a chronic disease, it could be easy to feel as if you have been treated unfairly, and that response is also completely understandable. Life is often changing at an accelerating rate. Let’s face it, life with chronic disease changes your life forever.

I believe it is important to grieve over friendships that are drifting or are lost. That grief process is necessary, but I also believe once we have done the grieving, there comes a time to reach out and connect again — within our new limitations and with new expectations of ourselves and others.

I’ve been involved with online support groups for two years as an administrator. My aim in these groups is always to help others. It’s something I love to do and I feel it gives me purpose. It helps me make sense of this new phase of my life, this whole new world where I am daily finding ways to live anew with complex diseases. The unexpected outcome from being involved with these online groups is the friendships I’ve seen blossom among two people or groups of people. Friendships that have leaped out of the Facebook forum arena into coffee shops and home visits or regular phone calls and emails. The added bonus for me has not only been connecting others, but also finding my own connections with like-minded beautiful people who I now call “true friends.”

“Friendship is born at that moment when one person says to another, “What! You too? I thought I was the only one.”  – CS Lewis.

If you’re looking for genuine support, care, understanding and friendship, you are welcome to join my closed Facebook support forum, “Medical Musings with Friends.” It’s a safe place to connect with others living with chronic and complex diseases. People who truly understand the daily challenges.  A warm welcome awaits.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by: lorenzoantonucci

JOIN THE CONVERSATION

Related to Rare Disease

mom and son smiling

Our Family's Journey So Far With a HIVEP2 Gene Mutation

My family is on a journey I didn’t expect to take, and a foundation of hope has been my north star. Our journey can be inspiring but also many times daunting, and if we become hopeless we will lose our way. I would like to honor my son by sharing part of his journey. Curren [...]
hands holding small red heart against wooden table

The Power of Kindness for a Person With Rare Disease

Our culture obsesses over the “perfect” physical body, so it’s no surprise to those of us who endure rare disease that kindness is often not the response we usually expect or receive when people ask us about our health and bodies, or about the health and bodies of our children with rare disease. During this [...]
"Little Levi" Krystosek tours the cockpit before his Miracle Flight.

How Miracle Flights Help Us Roll With My Son's Rare Disease

I remember hanging on to the toes of my mother as she died. Her battle with cancer was coming to an end and I felt the need to tell her who all was in the room. My voice was close to a yell. ”Dad’s here, Paw Paw’s here, Me Maw’s here and I’m here!” I [...]

5 Lessons I've Learned About Accepting Limitations With Illness

With my chronic illness comes a lot of guilt. It is mostly guilt about being a disappointment to those around me. Guilt about the things I cannot do. Guilt about the events I miss out on. Guilt about the memories I cannot make. I also struggle with the many limits that come with living with [...]