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.

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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.

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Thinkstock photo by: lorenzoantonucci


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