Snow globe

I have been prone to a lot of painful thinking over the last month, my thoughts endlessly shaken up and swirling, briefly settling only to stir again. It has taken me some time to write as I waited for them settle a little.

While I study positive psychology and mental wellbeing both personally and professionally, there remains a truth I sadly know all too well: a head full of knowledge is unable to prevent a heart full of hurt.

Whilst facing painful anniversaries and housing insecurity, a relationship which brought me unexpected hope became untethered and I have regularly felt swept away in its wake.

Something else I know too well from lived experience: relationships can be difficult to navigate at the best of times, and being chronically ill can amplify any challenges. Writing in Psychology Today, Katie Willard Virant notes how chronic illness “interrupts connection by removing opportunities for interactions” at three different levels:

Micro Level: “The beliefs we hold about ourselves affect our relationships. Many people who live with chronic illness carry a feeling of shame about their illness, believing that their illness makes them unlovable. They feel as if their symptoms make them too needy and devoid of the necessary resources to be good partners, parents, and friends.”

I have long struggled with internalising society’s perspective on disability and chronic illness, and the perceived lack of contribution I may make to society.

I do my best to compensate, of course. I try and be productive, to accomplish even the smallest things with my day each day. I actively make myself available whenever folks are in crisis, do my best to be generally supportive and resourceful to those I encounter and, if that doesn’t work, there’s always the option of plying someone with baked goods. And I know many others who have far greater physical and mental health support needs than I do, which have in no way prevented them from finding love, care, companionship and support.

And yet, as someone immunocompromised through ME/CFS and still “coviding” (taking the ‘long game’ around this neurological, vascular and immune-impairing virus), asking for accommodations to keep me safe - like testing, masking, and isolating to spend unmasked time together - leaves me feeling needy and unreasonable. It can be hard not to ponder whether I am worth the effort.

Mezzo Level: “Our interpersonal relationships with family members and friends also are affected .. with close connections disappearing. Many people (consciously and unconsciously) are frightened by the vulnerability that exists in being human. Our illness brings that vulnerability (and their anxiety) to the forefront, causing them to defend themselves against their painful feelings by distancing themselves from our experiences.”

I am incredibly lucky to have people in my life who assure me of my loveability and ‘specialness’ through their kind words, and yet I seldom see them in person. Despite the sadness it causes me, I feel for them. It’s hard to offer in-person companionship amongst more pressing demands (the squeaky wheel is the one that gets oiled) and my continuing caution (roll on better weather, so meeting outdoors isn’t so unappealing); I know that it’s painful to be privy to another’s painful social isolation and yet feel powerless to alleviate that suffering. It sucks all round, basically.

Macro Level: “Relationships with the larger community are beneficial [and] reminds us that we are part of the larger fabric of communal life .. COVID continues to make many people living with chronic illness wary about the safety of using public spaces. This use of public spaces is an important avenue for connection, and it is problematic that chronically ill people can’t easily avail themselves of these opportunities.”

God, I miss going out and just being around other people. A trip to the supermarket, treating myself to the occasional hot drink or sandwich, smiling and making inconsequential chit-chat with a stranger… While there were many times that it felt like I might drown due to my exhaustion or general high sensitivity, on a good day it felt wonderful to surf the sea of humanity and be around other people when it was so rare to see friends.

Contemplating all of this has left my mind shaken like a snow globe, an image I was reminded of by a recent podcast with Michael Neill. And, as with any snow globe, I know that the flakes will settle again if I allow them to. It’s in their nature to settle.

It just takes patience which, in the wake of my 17th anniversary of collapsing, I guess is still a lesson the Universe wants me to learn.

Photo by Akshay Nayak via Pexels