In a recent conversation with a fellow heart failure patient, who has had the condition for five years, she began to cry when she talked about her interactions with a lifelong friend post diagnosis. With her permission, I quote her here…
“Despite the fact that I have explained it to her over and over again, she still doesn’t seem to realise that I live with an ongoing condition that renders me unable to do what she can do. She asks me so often if I am going back to work, but each time I tell her my heart function is so low that I can’t get through a morning or afternoon without a nap, that I’m barely managing to go for a walk and to cook dinner for the family each day, yet no matter how many times I tell her this, I seem to have to re-explain my situation again a few weeks later. Why is she repeatedly doing this to me???”
It’s not the first time I have heard people talk about the problems that can come with the ‘invisibility’ of their illness. Indeed, I have lived some of these challenges myself too and it’s a topic that comes up a lot in the patient advocacy work I do e.g. a few months back in a podcast interview, I heard another heart patient, this time a male, utter, “I sometimes think it would be easier if I was missing a limb than having heart failure, at least then people might have a bit of understanding and not throw me dirty looks if I have to take a seat on a bus, while a woman is standing”.
The ‘understanding’ hoped for is that the limitations of our situation, though invisible, will be appreciated and taken on board by others, without judgement and without unfair expectations being levelled on us by same.
Pain, fatigue, physical weakness, anxiety, depression, scarring, PTSD, parts of a body not functioning, or barely functioning or indeed, heart break, depression and loss can be made more challenging to live with if weighted down by a lack of understanding as to why loving, supportive attitudes are vital to living with them.
Now of course there are many in our world, for whom the physical invisibility of our illnesses or life struggles doesn’t dumb down their understanding or empathy for the one baring the issue, who ‘get it’, almost instinctively and won’t try to push, or fast track another’s struggle to history. And they are often the same people advising and encouraging us to take care of ourselves with such sincerity etched on their faces as they say it, that indeed we will, even if just not to let them down.
But the truth is, not everyone will ‘get it’ when it comes to our inner realities, perhaps because for some, out of sight is out of mind, or perhaps because of ignorance of the direct experience of our illness or struggle in their own lives, or because perhaps they can’t accept that we have changed, or maybe even because they are venting or projecting their resentments, or judgements on us. The list could go on and on as to why people behave like this, but a broad spectrum of both psychological and spiritual opinion would advise us that while we can’t control how other people react, we can control how we react to their reactions. As Wayne Dyer said, “How people treat you is their karma; how you react is yours.”
So, if we have that awkward friend, or family member who keeps pushing us, or keeps ‘not remembering’ our reality, then what do we do?
Glennon Doyle perhaps explained this in its simplest form when she said, “This life is mine alone. So, I have stopped asking people for directions to places they’ve never been.”
Finding a belief system that allows us take the directions we need to take regardless of what anyone else thinks, in whatever way we can is indeed vital to our wellbeing. Whether through a shift in our thinking, or through some spiritual enlightenment, we must be sure to give ourselves the understanding we’re seeking in the dark moments, rather than focusing on, or waiting for, those who can’t or won’t, to deliver it to us. Self love, it seems, is the only way we can have the security of knowing it’s not only OK not to be OK, but OK too, to respect and care for our beings in order to get better.
And if others are giving us a hard time about that, perhaps we need to consider how much we want to expose ourselves to them, if at all.
Finally, if you’re still struggling to accept that you must love and support your own being, no matter what others think or say, there’s always that reliable old L’Oréal phrase, now in its new plural form, reminding us why we must: “Because we’re worth it!”
© Pauline O’Shea
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