Friendship When Chronically Ill: The Importance of Finding Your Core

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Dear Friends,

I sit here on a relatively gloomy Tuesday, contemplating the deliciousness of ice cream (which is coconut ‘milk’ based due to food allergies).  I am also having serious thoughts about how we, as a society, define a friend.  I recently had my online friendships criticized as “not real” and that stung terribly.  If they aren’t “real” friendships, then what are they?

According to Merriam Webster, a friend is “one attached to another by affection or esteem.”  Note how this definition does not require the physical presence of the other or ‘doing stuff’ together.  Yet, so many times, friendship seems to require this to some degree.  The end result is that we establish a hierarchy of friends, often based on physical, rather than emotional proximity. If we are unable to go to the theater or to lunch with someone we have affection for, are they not a true friend?  

Have you ever noticed that societal norms assume that everyone is able-bodied?  We define everything from a foundation of wellness and the illusion of wholeness, where everyone who does not fit within society’s standards is somehow less of a person.   Mobility challenges, mental health diagnosis…really anything outside of the stereotypical able-bodied, heterosexual, white, cis male, is by default, intrinsically flawed.  The less one fits to this standard, the more they experience barriers to things even as basic as friendship and social interaction.

Enter the internet in all its’ flawed glory.  While I could easily go into a long lecture about the problems associated with the internet, particularly social media use, it is not without its benefits.  Through social media, we are allowed to make connections with others, regardless of distance or nearly any other factor that makes socialization a challenge.  However, the relationships built are somehow viewed as not valid in the same way as an in-person relationship. This view is actively harmful to a broad swath of the community.

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In the last year, I have become close friends with a handful of people I met through Twitter.   I have been incredibly lucky and blessed to have a group I call “My Core”.  It is a tight group, and just the four of us.  We talk about our families, our interests, and some mundane (or not-so-mundane) daily happenings.  Though ranging in ages, locations, and diagnoses, we have a bond that is deep.  They are the sisters of my heart.  I truly do not know where I would be emotionally or physically had I not met them.

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My story is not over yet and neither is yours.

Chronic illness comes with a never-ending cycle of grief.  One diagnosis turns into a laundry list of ailments.  Treatment plans that once gave you hope, fail.  Your medicine cabinet overflows and you feel as if you alone are supporting the pharmaceutical industry. You grieve the life you lost.  Everything you had planned for is brutally taken from you.  Those years that you put off things because you just assumed you would be well.  There is no coming up for air, as your brain scrambles to adjust….and you sink further and further down.  You lose the people you thought were your friends, as it becomes too hard.  Too many plans fall through and the invitations to events vanish.  No one knows what to say or do and visits become ones where you sit quietly and stare at each other, exchanging casual murmurings of the weather.  No one wants to rehash your appointments with specialists, the new treatment plan, or clinical trials available for your condition.  No one wants to talk about how you feel guilty that you somehow caused your illness or didn’t try hard enough to get better.  No one wants to talk about how you feel like you have failed your family.  No one wants to talk about the possibility that you may be taken from this life before you’ve a chance to go grey.  No one wants to talk.

“It’s an odd feeling, being erased from someone’s life, as though they are trying desperately to silence you, forget, pretend you never happened. Today I watched my footprints disappear as though I had never crossed the sand…” @BrowofJustice

But, my Twitter friends want to talk.  We talk about the grief and the diagnoses and the treatment plans.  We talk about the hard things in a space that feels safe to us.  We talk about how we will ensure that, if in the event something happens, we won’t leave each other scanning the obituaries.  After all, they have been there and ‘get it’.  My sisters taught me about an amazing hack for lidocaine patches and offered diagnostic and treatment advice that is actually working.  I get unquestioning support on the worst days and I give unquestioning support in return.  It isn’t uncommon for one of us to call another while in the midst of ugly-crying.  We talk about visiting each other and having a spa day or just sitting in the dark together just so we feel less alone during a high pain day.  We aren’t always so practical and sometimes we get downright silly.  We have fantastical plans of lottery winnings, traveling RVs, and a dinosaur ‘siren’ and the better part of me wants to see this, desperately.

I wish I could say that things are different and that my group has been able to lift this weight on my heart.  I wish that I was stronger and could, by sheer will alone, escape this feeling of grief.  I wish that every time I looked at my children, I didn’t worry that I am not enough for them.  This isn’t the case, because depression is a liar and right now, the best I can do is live one breath at a time.

Love,

Rie

 

 

 

 

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4 thoughts on “Friendship When Chronically Ill: The Importance of Finding Your Core

  1. You are a great twitter buddie Rie and our conversations re: chronic illness will always be valuabe my friend 🙂
    Huge healing fluffie hugs and wishing you wellness
    Carole Sian Xx

    Like

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