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The Power of 'Spoonie' Friendship When Your Healthy Friends Don't Understand

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You would be hard pressed to find a person who doesn’t see the value of friendship. From the time we are small children, into our teen years and beyond, friends play an integral part in our lives. As children, friends help teach us valuable life lessons on how to share and learn patience. As we transition into adolescence, we begin to develop trust in our friendships, and it is those bonds which help us form our sense of self. In adulthood our friends become a stabilizing factor in our life, often providing a sounding board when difficulties or challenges arise.

What happens to those friendships when you become sick? How are those bonds challenged when chronic illness enters the relationship?

For some of us, our friends remain in our lives, ever as strong as they were prior to becoming sick. They adapt to our changing needs and abilities, and remain a supportive, central figure in our lives.

Unfortunately for many dealing with chronic illness, friendships are tested and often don’t survive. There are many factors that contribute to the breakdown in our relationships once chronic illness enters the picture. Many times friends lack the ability to empathize, and place blame on their chronically ill comrade. Some lose patience for the last-minute cancellations, leaving us crowned with the “flake” label. The invites slowly disappear, the texts and phone calls dwindle, and eventually our relationships fade away.

Even when supportive friends remain, they may fail to fully grasp what our experience is. As a chronically ill person, or “spoonie,” we may find ourselves shielding or hiding a part of our identity from our friends — the part that affects all aspects of our life — being sick.

Many of us withhold our spoonie challenges from friends. Oftentimes, we don’t want to burden our relationships with our struggles, because let’s face it, will they really fully understand anyway? Well-meaning words and advice often come across as having pity on us, and as many spoonies would attest to, that’s the last thing we want or need.

Well-intentioned or not, it’s simply impossible to fathom how challenging life can actually be for us. And that’s why it’s imperative we have friends that can identify with out struggles without showering us with pity. Spoonie friends.

As someone living for 12 years with complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy, I have been fortunate to forge some amazing relationships with my fellow chronically ill spoonie cohorts.

For the first six years of my journey I lacked a solid group of spoonie friends. There were small internet-based groups, and I had email contact with a few amazing CRPS warriors, but I still felt very much alone and isolated. I often found myself unable to identify with my healthy, non-disabled friends. I, like many, would conceal the physical discomfort I was in, or the emotional distress I was experiencing, and pretend everything was fine.

As social media gained popularity, and online communities began forming, I was able to connect with others dealing with the same thing on a regular, consistent basis. Over time, regional groups formed, allowing for local connections and in-person support.

Last week, I met for brunch with two of my spoonie friends. Like me, they both have CRPS and had been struggling with an increase in intensity of their baseline symptoms, or “flaring” as we say. When we were making plans, I asked if we could meet somewhere where parking was close. I didn’t have to explain why, or justify my request — they just knew. As we munched on pancakes and French toast, we chatted about what any other healthy or non-disabled friends would, like our relationships, pets and plans for the upcoming holiday, but there was a distinct difference. Among us lay an unspoken, unconditional support and understanding for how being chronically ill impacts our lives, and that is the power of spoonie friendship.

Simply put, spoonie friends just get it. There’s no annoyance, anger or blame when we have to cancel plans. If we show up without makeup, or in sweats, or seemingly odd clothing choices for the weather, no one thinks twice. If we were walking around fine last week but now need to use crutches or a wheelchair, we aren’t questioned.

When the pain is overwhelming, or it’s been days without sleep, it’s our spoonie friends there to take the 2 a.m. text or phone call. When the realities of all the loss in our lives hits us like a ton of bricks and we lose all hope, it’s often our spoonie friends holding space for us — not trying to fix the situation, not pummeling us with advice, just there reminding us we aren’t alone on this journey. And that is incredibly powerful.

Originally published: July 6, 2016
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