Sunday, 16 June 2013

Surviving Chronic Illness: Positive Affirmation

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 daily affliction of chronic illness presents an emotional battle as large as (if not larger than) the struggle with physical symptoms.

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
·       Changes:
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   privacy
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:


  1. I needed to read this now :-) Ocular myasthenia gravis, symptom-free for almost 4 yrs now, but every now and then I feel it tugging at my heels, and then anxiousness sets in.

    1. Hi Stel,

      Thank you for your reply. I am glad that my post was timely for you but also sad that you know the anxiety of a chronic illness which can flare up with little warning.

      MG was one of the conditions for which doctors were investigating when trying to diagnose me, yet I know little about it except it involves muscle weakness (one of my symptoms).

      How long have you lived with your diagnosis? How does MG affect you? I realise these are personal issues, so please excuse me for asking if you would rather not discuss it here. Of course, you are always welcome to use private email at and I am happy to be here to listen and learn and share experience. If blogging about issues can help to ease the pain for someone else, the job is done.

      There are times and places where I will avoid the discussion of illness, mainly because I don't want to know about it. When feeling relatively well, I prefer to enjoy the moments and pretend for a short time that there is nothing wrong with my health. That is why I haven't really discussed it in great depth here before.

      How fantastic to have 4 years without symptoms, Stel! Yay! The challenge is to keep taking care of oneself to stay symptom-free as long as possible. You must be doing something right. Keep up the good work.


    2. Diagnosed in 2009, symptoms cleared after 3 months of treatment, but I am still aware that is there, somewhere. After hard training, I can feel extremely tired, but sometimes must chase the ghosts by telling myself that ANYone will feel shattered after such a session :-)
      Agree with you about the discussion - being part of a FB group where I can get info is great, reading about really bad cases is not, so I try to avoid that.

  2. Those reminder cards are a great idea. Hugs to you! What a challenge you are facing.

    1. Hi Cindy,

      Thank you for your hugs. Any adjustment in life can be a challenge and hugs do help! In this day and age, we could keep those positive affirmations stored in the mobile phone, but that requires the conscious effort to retrieve them.

      By keeping a small group of cards by my bedside where I could see them everyday, I couldn't help but read them, and memorise them where relevant - a bit like the little psalm cards that I was given as a child at Sunday School.

      Cards don't strain the eyes like lit screens do, and in places where the mobile phone needs to be switched off (like aircraft, hospitals etc.) they are still accessible and useful. I can re-arrange the set however I like with ease.

      Hugs to you too!

  3. Sounds as though you are in a better place than before. Maybe your cards helped with that process? It is a really great idea and I am glad that you are now able to share it with others as it may well help them too.

  4. Hi Alice,

    Yes, your observation is right - there was a time where I was bedridden and barely able to sit myself up. Very gradually, I have been able to recover to a point where I can sit up at the computer and write a blog, and manage many of the daily tasks which were once beyond me.

    The mental challenges listed can apply (and are common) to anyone experiencing chronic illness or disability whether it is caused by, for example, arthritis, a stroke, accidental injury or debilitating illness. I have been touched by all of the issues listed, some a teeny-tiny bit, and others have hit me like a brick.

    Often in the midst of a crisis it is hard to pinpoint why we might be feeling a certain way or experiencing problems, until someone points it out to us and articulates the issues in words. Once I had the words to describe what was happening I could begin to address the problems and work through the emotions to get to that better place. The cards helped me to remember the important words.

    It is an ongoing and changing struggle. Medications and therapies that are effective in managing my condition have also helped. Plain old 'trial and error' experience does too. While my illness doesn't seem to have got "better" my ability to manage it has. Crochet has been a part of that.

    Thanks for your encouragement and I love your blog title, especially "4sanity". Totally 'get' that.


  5. What a great post! I live with MS and can totally relate to what you wrote! Having a positive attitute is so important! :) i oftem say: i have ms but the ms does not have me!
    Take care

    1. Wilkommen, Anne. I am sorry to learn that you have ms but I love your saying! Thank you for taking the time and energy to reassure me that this post is 'on the right track' but it saddens me to know that you would have experienced some difficult times in order to relate. If you see things differently or have any other ideas to add, feel free to mention them here. I don't mind whether it is in English or German. I would like Lupey Loops to be a supportive place for sharing experience, ideas and education about living with a chronic illness. Cheers! :-)