The mental challenges of chronic illness are often more difficult to handle than the physical ones.
My collection of 'reminder cards' have helped me to heal body and mind.
The ‘emotional minefields’ to be crossed may be planted by myriad issues:
· distressing symptoms
· limitations imposed by the physical manifestation of disease and/or disability
· disruption to routines caused by medical interventions, treatments, hospitalisations, appointments, etc.
· fear of the unknown, especially when one is very ill, yet with no diagnosis while symptoms progressively worsen:
o what’s happening to me?
o why is it happening?
o what will become of me?
· general stress of trying to manage one’s life responsibilities (e.g., parenting, bills, household organisation) in the midst of a crisis
· denial of the situation whether by oneself, by loved ones or general society
· coming to terms with the reality of it all
o to relationships as one’s ability to function and level of need changes
o in personal values, which in turn affects relationships
o in self-esteem and personal identity
o to the home environment as modifications may need to be made to accommodate mobility and/or medical equipment
· Loss (and lots of it). Losses may include:
o ability to do the things one loves to do
o ability to express oneself in the manner in which one is accustomed
o friends and family. The confrontation of illness can be too difficult for some.
o favourite activities and social circles
o a job and the ability to earn an income and the sense of self-determination which goes with it
o earnings and financial stability
o control in both bodily functioning and independence
o one’s sense of place in the world, a sense of no longer belonging where one used to feel acceptance and belonging
o confidence, self-esteem and self-worth
Add to that the ‘skirmishes’ which occur as one encounters a health system full of so-called ‘professionals’ who are either oblivious to, or take full advantage of, the vulnerabilities and sensitivities of a person trying to come to terms with such major changes and events in one’s life:
· callous and insensitive health practitioners
· the indignity and humiliation of being treated as a depersonalised production-line science experiment; a number, a ‘patient’ to be poked and prodded and ‘investigated’ instead of as a whole human being
· painful procedures and treatments
· new problems arising from side effects of treatment
· surgical mutilation
· misdiagnoses and medical negligence or incompetence
· abuse, physical and emotional
· post-traumatic stress
· intricate systems of administration with abundant paperwork and unreal expectations at a time when one is least able to handle it
Is it any wonder that one’s spirit takes a beating?
This is where my ‘reminder cards’ come into place. When feeling low or requiring strength, I would reach for my little cards and read through them. They contain reminders of what I need to do to take care of myself, affirming what I knew to be right and true, keeping me focussed on the right path to recovery.
These words came from supportive people and useful resources. Whenever I found words that succinctly expressed my feelings, I would write them down so they could easily be retrieved in times of need; when my brain was too fogged with fatigue to think clearly.
It is remarkable the amount of hostility one receives from general society for suffering from a chronic illness that is, to outsiders, an invisible mystery. The simple question proffered by an acquaintance, “How are you?” is fraught with anxiety and confusion as to the answer.
To cope with these challenges, I might keep a couple of pertinent cards in my pocket or handbag as reminders throughout the day to keep me feeling strong in spirit or to provide comfort after being attacked by a cutting remark by some unthinking person, whose platitude is a ‘throw-away line’ for them but a major hurt to my psyche.
This year, I haven’t felt the need to reach for my cards – in fact I forgot all about them until I was sorting out my things and came across them again. Perhaps their messages are assimilated with my being now. They were so helpful to me that I am sharing them now to help others.
Let’s start with the first card. I will leave you to consider the message:
“Live well, even if you can’t get well.”
Related Posts on Lupey Loops
"'Live Well' Even If You Can't 'Get Well'", 27 April 2014:
"Almost There: Acceptance & Affirmation", 29 September 2013: http://lupeyloops.blogspot.com.au/2013/09/almost-there-affirmation-acceptance.html