Accidental Crying & Chronic Illness Feels; Also Reflections on Friendship

This week was not at all what I expected.  On Monday morning I was cautiously optimistic about phd progress as well as closure regarding unsettled/unsettling big life things. Instead, this week I was blindsided by mystery tears and falling apart, and then confronted by the full realization that I am not, in fact, coping as beautifully as I thought I was with All The Hard Things.  Apparently I am actually a ball of tightly wound barely-keeping-it-together overwhelmedness and unprocessed feels about the multitude of ways chronic illness has reshaped my life (against my will). Who knew?

Here is my attempt to name some of those tangled-up noisy persistent feels that I have, up to this point (perhaps as a totally valid coping mechanism) kept mostly squashed down because I have no way of dealing with them.

1. The impact of chronic illness on friendships

I’ve tried to articulate this before, but it’s hard to find the right words for a problem that has no solution and also just makes everybody feel bad.  I wonder if I should even talk about these things out loud at all.

But no words leads to misinterpretations as well as a profound sense of alienation and isolation when almost all of my interactions awkwardly sit at surface level and none of the big life-rearranging truths are spoken, so maybe it’s better to say something rather than nothing. So here are my awkward truths:

I (almost always) feel an active aversion to going out and doing stuff with friends, even when I have enough ‘spoons’ (a metaphor for the finite and carefully measured and monitored energy and hence capabilities that come with chronic illness).  This is because:

Being around people who have All The Energy to do All The Fun Things (read: all the fun things I used to do & imagined I would still be doing) makes me feel sad and confused and resentful, and I don’t know how to deal with those overwhelming tangled-up feelings.

Sometimes I feel more isolated being around Friends With Unlimited Spoons than I do at home, alone with my cats.

I don’t really know how to relate to Friends From Before Illness anymore, now that my life has changed.  It feels a bit weird and awkward. Do we still have things in common? Sometimes I am not sure anymore.  Would we be friends, now, if we were meeting for the first time? And you didn’t know the pre-illness version of me?

All of 2015 I was too fatigued to knit, crochet or even sew a thing, so I even have trouble connecting with People Who Are Not Sick about non-energetic creative hobbies these days.  Some evenings I am too fatigued for the least energy intensive activities possible, like colouring and netflix.

Friend: “I am still doing this fun thing you can no longer do. Also we are putting on a show.  You should come!”

Me: … (am I making the right face? What is the face for this?)

Friend: “Also I got this new job that I am excited about. And I have these fun plans for the future. And also am doing all of these creative things that are very rewarding and validating. Kind of like the things we used to do together.”

Me: …. (Is this the right face for ‘glad for you’. I hope I am making the right face)

[Conversation dialogue inspired by Hyperbole and a Half--Adventures in Depression Part Two]

[Sample conversation dialogue above inspired by Hyperbole and a Half–Adventures in Depression Part Two]

What I contribute to our conversations: “Yes, I am still sick.”  “Nope finally having a diagnosis does not mean it will be cured, but at least people no longer assume I’m a hysterical hypochondriac with a bizarre eating disorder, so that’s good.” and “Nope, no new stories to tell, I still sleep a lot.” Lastly, “Cats are great. I love cats…”  This repertoire quickly becomes old with repeated interactions.

Additional depth is often more awkward: “Yes these family members are still suicidal and addicted to various things but they’re no longer talking to me, so… I’m just trying not to think about it…” Or, “Oh, the future?  I have no idea what that will be like now that I am sick and it’s terrifying” (see below).

Now that I am sick, I keenly feel (or imagine) your a) disinterest, if we have already covered this conversational ground in previous interactions; or b) awkwardness, if I try to communicate about almost anything that is happening in my life, because, for some inexplicable reason, they are almost all Big Heavy Overwhelming Things that don’t neatly fit into light social interactions. Or cats, which we’ve already talked about.  Also, I don’t really know how to articulate a lot of what I’m feeling to myself, let alone to you, so often I am having trouble interacting with genuine depth.

How do friendships work between people who become sick (forever) and not-sick people from the time before sickness happened? Is this a thing other sick people have trouble with? Because it’s totally fucking with my head, and I have no idea what to do about it. Is sharing these feelings with you the right answer?  Or will it have the opposite effect and further alienate you? I think being honest about feelings is generally good though.  Or maybe it isn’t. Maybe there are social codes of politeness that require dishonesty. I don’t actually know. Sometimes I am confused about everything, and this is one of those times.

Avoiding you is clearly not the right answer. Regardless, though, it seems like we inevitably grow apart. You still have your life and all your fun things, and also your job and other friends, so maybe you don’t really notice much, I am not sure.  I am at home watching star trek with my orange cat.  I notice.

I wonder, “Where have all the people gone?” “Did I push the people away?” “Am I still friends with the people?” “Oh well, I guess I don’t have energy for people today anyway.”

Friendships are harder when you no longer have things in common, and it’s really fucking hard to come to terms with the reasons why you no longer have things in common (illness, forever), and being together often reminds you of your newish and imposed limitations, and you are angry and sad and aggrieved about said limitations, and also, you are exhausted, All. The. Time. And possibly in pain. There are all these cascades of overwhelming feelings that are impossible to untangle and even harder to articulate, but they are always not far below the surface.

Do other ’spoonies’ feel these things too, or is it just me?  The two other people I know with somewhat similar illnesses always seem to be coping so much better than me. And I begin to wonder whether these feels say something about my character and poor coping skills, and whether the resentment that I sometimes feel means that I am a bad person.

And then there is grief for the friendships that fade as you lose yourself to illness and become somebody different.

Except oftentimes it’s not even very conclusive, just a gradual drifting or ghosting, without the finality and clear articulation of ending that would allow grief and moving on.

I still find myself wondering sometimes how to fix these things, or at least halt any further dissolution. But I am trapped and immobilized by not knowing how to connect or whether I should not even bother trying, and often I don’t even having enough energy to make a decision one way or another. These are too many feels, and the answers are tricky and elusive, so I continue to distract myself with Star Trek and orange cats.  Picard is very soothing, and Data’s interactions with Spot are moments of pure joy, distilled.

2. I am terrified about the future.

Terrified.

This contributes greatly to the accidental crying at inappropriate moments.

Will I be able to work when my PhD funding runs out in three months? Can my body handle a job that is less flexible than my current 10 hours/week TAship?  Can my mind handle a part time professor contract, should I be lucky enough to receive an offer?  Right now I think I can, but what if the brain-fog comes back with increased intensity?  If I don’t get a teaching contract, and I lose my health benefits, will I be able to afford my medications?  Is chronic illness a disability? If so, will I qualify?  How will I pay back these loans? What if I get even sicker because of the side effects of my (immune suppressing) medication?

I don’t know how to plan for the future, because my body, and therefore my future, is unpredictable. This is terrifying.

Entocort/Budesonide Warnings

Entocort/Budesonide Warnings

3. I am constantly trying my hardest and it never seems to be enough.

I remember what it’s like to be able to schedule various things into my day and have a balance of work and school and friends and chores and pet care and hobbies and meaningful engagement with the world. Now I can have about 1/10th of that, and it’s up to me to make choices about what to prioritize and what to set aside. Plus, I am now bad at lots of things I used to find easy. I am always exhausted, and I am often in pain. This is hard, and it’s frustrating, and it’s not fair. I am generally angry and sad and confused and also terrified, and usually trying not to feel these things and therefore from the outside I look fine, except maybe a little bit standoffish and cranky (exhaustion and pain will do that to a person). This is the thing about invisible illness. Everything is invisible from the outside, and people often make inaccurate assumptions.

It’s really hard sometimes to be patient, and calm, with all of these feels.

I am trying my hardest, always, all the time, but I don’t really know how to do anything any better, and I don’t know if I will ever become better at coping/life. I hope this gets easier, but I have no idea if it ever will.

***

Those are the reasons, as far as I can tell, for my last set of inappropriate mystery tears. They are no longer such a mystery, hooray! There’s probably more going on inside, but those are the three things I could catch ahold of this week, so that will have to do for now.

My hypothesis is that thinking about, writing down, and communicating as many of the tangled up feels as I can wrap my mind around will  a) help me to not break into tears again at inappropriate moments because that is mortifying b) save me money on proper therapy, and c) also help me stop having anxiety dreams about flash floods and drowning and everything falling apart, subsumed underwater.

Also I really want other spoonies to read this and tell me I’m not crazy and you know what this feels like and everything will be fine.  But only if you mean it, I don’t want you to tell me things that are untrue to make me feel better. I would prefer difficult honesty to comforting lies, please.

Welcome to my brain, I hope this glimpse inside has been informative, relatable or productive in some way. Now the things have been said, and I think I actually feel better, maybe.  A little less alienated.  Ready to set this aside and catch ahold of optimism again for a bit. Yay.

Love & spoons,

Me.

p.s. Following many good conversations, here is my Epilogue/Some Closing Thoughts on Chronic Illness & Friendship.

p.p.s. I also have a spoonie themed tumblr page that I use more than this blog—if you want more insights on coping, spoonie memes or cat photos, you can find me at: http://catladycolitiscoping.tumblr.com/

Edit/clarification re the friends/resentment part: The resentment isn’t directed at people for not being accommodating or anything like that, its different.  I resent that I can’t do the things I want to do.  Like physical things, e.g. I’ve had to drop out of Kung Fu.  I can’t even do the more active yoga classes anymore.  Or creative things–e.g. if I prioritize walking the dog and working on my dissertation, and doing the dishes, those are all my spoons.  There are no more spoons for crochet projects or personal writing or making music.  I miss being creative.  My interests haven’t gone away, it’s that I’m not physically capable of doing the things I want to do, and that’s what I resent.  I resent having to choose, and I’m envious that other people don’t have to make those kinds of choices.

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2 Responses to Accidental Crying & Chronic Illness Feels; Also Reflections on Friendship

  1. TheDuck says:

    hey, thank you for posting about friendships and spoonie-hood. i am feeling and processing a lot of the things you mentioned – am also wondering how friendship works after illness, forever and with “Big Heavy Overwhelming Things that don’t neatly fit into light social interactions”. hard, hard stuff. you are not a bad person ❤ there are just too few models/scripts/ideas for how to be with people when they/we are ill. Thank you for the honesty and vulnerability here.

  2. Tammy Newhook says:

    Writing and talking is definitely the best thing you can do Nikki. We have to deal with what we are all given in life and I truly believe you were given this wonderful talent (writing) for many reasons. Mainly to keep sane! Secondly as a way not to worry about your future…write write write…publish publish publish…And Last but not least the most important reason to deal with our family issues..I also want to say how very sorry I am for not keeping in contact with you but as you will see with AGE and I really want to make this point …friends go away and you become a unit with your own partner…this is just my personal opinion but I believe it’s age that’s making you feel alienated AS well as your idioc disorder…you have such a real talent, you can communicate so meaningful and never settle to be a surface level person…you are NOT that…in the mean time I will always love you and be so proud of the woman you are and will continue to become, and look forward to your brain as it keeps reflecting on the truth in life….hugs my cousin

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