A little while ago I posted a book review titled “hidden from view“. The idea was that the real root-cause of chronic illness is often hidden behind other more obvious reasons. We think it’s a physical, structural reason, but is often a deeper more subconscious, psychological cause.
More recently, the idea of “hiding” took on a different meaning for me – (I still resonate with the way root-causes might be out of view and that’s why it is hard to heal) – but I also started to think about the way I hide my illness from others.
I’m going to suggest that in those early months of creeping from episodic migraines to chronic, it was because I didn’t actually know that I was becoming so sick. As chronic illness coach Cynthia Covert says on Linked in:
I became aware that my eye was aching in a way that usually says “migraine coming” in June 2022. It suddenly occurred to me that the pain was there 24/7, but the full-blown catastrophe of a migraine did not always accompany the symptom… as the days turned into weeks, and the migraines came and went with more regularity, I realized something wasn’t right. Life slowly became less and less manageable, and it was getting harder and harder to “push through” and ignore the pain… it was no longer hidden from me that I was SICK… and – I was SUNK.
The next thing that happened, however, was that I began to hide the fact from the outside world.
Why?
The phrase “I’m embarrassed” comes instantly to mind – but embarrassed by what? If I was diagnosed with cancer would I be embarassed? Perhaps, but I feel like there is something subtle in the lingering nature of my condition that feels embarassing.
If I had COVID I’d say so. It feels like you were just unlucky to be sick. Long COVID however seems to carry a different weight; as if you were somehow careless or weak.
To have occasional migraines is unlucky. To have migraine pain of some sort every day for 1,000 days straight seems like I’ve failed somehow.
It reminds me of the quip from the Oscar Wilde play “The Importance of Being Earnest: A Trivial Comedy for Serious People” (1895) – the line is spoken to an orphan: “To lose one parent, Mr. Worthing, may be regarded as a misfortune; to lose both looks like carelessness”… sigh.
On LinkedIn a little while ago I saw an amazing post by Shabnam Rakhiba, chronic illness mentor, about the reasons we might be hiding our chronic illness, which she summarizes with a great infographic:
[Image source and full post: here]
They all seem like valid reasons to me. But – as Shabnam rightly points out; “hiding comes at a cost. Suppressing our needs and masking our struggles can lead to worsening health, deeper isolation, and emotional burnout.”
She speaks of how she becomes increasingly stressed when she hides her issues, and slowly senses she is becoming invisible.
It was similar for me. I felt as if retreating and staying silent was the best option, and yet silent retreat was lonely and depressing… this blog began specifically as a means of reversing that trend. I became increasingly disheartened that I was all alone in my dark world of pain. Speaking out, reaching out, finding out, has all led me to a place where I know I am not alone.
YOU are NOT alone.
It seems sad to acknowledge that there are so many of us struggling – but it is also a LOT less lonely realizing that. Speaking out also becomes empowering… the more you practice speaking out, the easier it becomes.
Stigma and misunderstanding and disinterest remain real.
I’m not saying that the world is suddenly going to be open to your pain, happy to listen, or empathetic of your plight… that would be… optimistic… perhaps even unrealistic… BUT if you can find a couple of people who are open to seeing you as you (such as me), it really does make a difference.
Silent suffering is not ideal.
Drop some hints every now and then when you’re finding it hard to live with pain… and if those hints land on a receptive ear, keep going… provide some extra details, encourage them to ask questions…
And as always, remember this goes both ways – be a receptive ear – listen to others when they try to reach out with stories of their illness situation… be a supportive shoulder to cry on, if you can… (there’s a dozen other posts I could mention about making space for other people’s pain when you’re struggling, but the introduction to my sister’s pain is one of them).
Take care taking care,
Linda xx
PS – the ever-roving version of me came across another blog that made me smile, and a poem-post that moved me to near-tears (I try not to get weepy as it can trigger a migraine) – it will only take you a minute to read, but it’s one last migraineur’s spin on the “hiding” theme: When I Can’t Bear You – Mind of an Enfant Terrible
The Mindful Migraine 
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