My Friends Get Real About What It's Like to Be Friends With My Chronically Ill Self

I have wanted to write a thoughtful piece about friendship and chronic pain for the longest time. I’ve saved several drafts of half-written essays that were either entirely unhelpful or read like a journal entry. It’s a topic that I have a cacophony of feelings on, as I feel epically grateful to have maintained a few really incredible connections throughout my life. I’ve also lost a host of friendships, too, so I’m not immune to the isolation, the abandonment or the chronic loneliness of it all.

As the sick friend, I am hyperaware that life can, and absolutely, does go on without me. I struggle with balancing the self-care and the sheer need to connect. During rough times, I am particularly cloaked with extra layers of guilt. And shame. And suffocating self-doubt.

So amidst my waffling about how to approach this subject, I landed on the idea to move the microphone away from myself, and to let you hear from the experts themselves: my friends. I’m letting them remain anonymous, so their true opinions can soar without guilt or attachment, but I’d like to tell you a little bit about them.

The snippets that you’ll read below are from some of the coolest people I know. They are whip-smart, genuinely caring to all ends of the earth, and give my messy life so much meaning and dimension. I’m not sure what I did in this life to deserve them, but I’m willing to share their boundless hearts with all of you.

If you’re the chronically ill friend in the twosome, I hope you’ll gleam some comfort from their answers. Reading through their interviews reminded me that I have worth despite my challenges, and so do you. Keep going.

And if you’re new to a “nontraditional” friendship such as this, welcome aboard this rock-and-roll boat and hang in there. The journey isn’t perfect and it may be a bit prickly at times, but there’s nothing like it. Stick around for the rainbow.

Before we dive into the specifics, give me your general impressions about chronic pain and friendship.

“It’s exactly the same as having a friend without chronic pain!”

“It’s like having window-only access to a scary world that you can’t experience for yourself. Your friend is stuck on the other side and you only see glimpses, [like] when they have the blinds open. You don’t have to experience it yourself to feel the effects.”

“It’s a gift. [Your] chronic pain has helped to give me perspective on what really matters in life.”

“It reminds me that we each have our own story to tell.”

Let’s talk about the challenges. Be honest.

“Talking about health issues can be tough. As a friend, you feel kind of helpless. You’re not a medical expert so you can’t give advice. [If] you live far away, you can’t bring over dinner or dog sit. It’s so hard and makes your heart ache.”

“I struggle with feeling guilty that I don’t and can’t really understand what you are going through, and am often afraid that I may be doing something to make things harder without even knowing it.”

“The relationship not only requires more flexibility and forgiveness in scheduling, but it also demands honesty from both participants. This unique breed of friendship commands a level of authenticity that can be uncomfortable for a lot of people. When tough topics are a very big part of your friend’s daily life, those topics become an unavoidable part of your conversation. Because of this, it is nearly impossible to maintain a superficial friendship with a spoonie — it’s a 0-60 approach.”

“[I struggle with] wanting to check in on your health but not always knowing the right words or approach…or if you even want to talk about it. I’m happy to listen and try to understand, but I wonder if maybe you’d rather not go through all the details.”

What have you learned about life from our friendship?

“Over the past several years, my husband and I have faced infertility and pregnancy loss. During the toughest times, I found the support of someone who understood frustration, isolation and feelings of failure to be invaluable. While I would never wish chronic illness on anyone, it has been a part of an authentic, enriching friendship.”

“Sometimes just getting out of bed is difficult. And [so is] learning, recognizing and accepting physical limitations. But I have also learned the beauty in connecting with someone going through challenges, and finding ways to connect that might look different than other friendships.”

“Someone may appear to be functioning completely normally and without pain, and yet inside they are suffering, completely undetectable to those around them. I learned how difficult it is for those that are highly functioning while in pain to explain to the people around them that despite the tough face they put on to get through the day, that there is a lot they aren’t witness to behind the scenes.”

“I’ve gained a better understating of what day-to-day pain looks like lived out. Living with chronic pain gives people very unique perspectives on life and I find myself checking my attitude a lot through our conversations.” 

What advice do you have for those that are new to a friendship, or are struggling to connect, with an in-pain counterpart?

“It may seem obvious, but just listen. I think anyone that is going through any kind of struggle just wants to feel heard.”

“Show up. Showing up can take many forms: food after surgery, gifts to the caregiving partner, hanging out just to watch TV, sending flowers, etc. Showing up doesn’t require an in-person visit. Show up even if you feel uncomfortable, or are afraid you will say the wrong thing, or don’t know how to be supportive. It’s the gesture that matters in the long run.”

“Ask the tough questions. The more you know about your friend’s unique challenges, the more equipped you are to help them. A topic you think might be uncomfortable to talk about is probably a topic of daily conversation in their world. Asking questions and opening up the conversation shows them you care and that you aren’t afraid to go to the uncomfortable places with them.”

“Be empathetic, but also acknowledge how strong your friend is. You can learn a lot about positivity and gratitude. Don’t be afraid!”