An A to Z of living with a chronic illness: Part 1…

I have decided to start a new series of posts about living with a chronic illness by using the alphabet!  Would love for suggestions or your ideas of what words that you associate with illness; words that you would choose to represent a letter of the alphabet.  So here it goes…

 

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A is for…

ADAPTATION

Yes, living with a chronic illness certainly requires adaptations in our daily life.  This is especially if the condition is one that has started later in life, rather than being born with it.  Those activities or chores that once was so easy for us are perhaps no longer suitable, or proves to be somewhat difficult for us to do, and therefore as a result we have to adapt and find a new way of doing those activities that provides enjoyment in our lives.  For example, completing chores such as washing-up, or ironing for example has become difficult for me because of the severe trembling in my legs; often leaving me unable to stand for long, and so I have to adapt the way in which I used to carry out these chores. Now, instead of standing to do these chores, I use a perching stool so that I am able to still do the chores, but just have to adapt the way in which I do them.

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B is for…

BUT YOU DON’T LOOK SICK!

Yes, this is one statement that many of those living with chronic illness has heard; especially taking those conditions which are invisible.  People just find it hard to believe that if you don’t look sick, then the person must be faking their illness, or exaggerating over the effects that the illness has on their everyday life.  But as we all know, not all pain, wounds or even symptoms of illness can be seen.  Many remain hidden, keeping all of its secrets buried beneath the surface of our bodies.  That is why I support the National Invisible Illness Awareness Week, usually held every September as it’s an excellent opportunity to make others aware of invisible conditions and disabilities so that those living with such conditions or disabilities are no longer stigmatised.

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C is for…

CHRONICALLY AWESOME

I love the concept of ‘chronically awesome’ as it’s all about taking illness out of our everyday thinking, and celebrating everything about ourselves that is awesome!  It’s about not letting our illnesses, or disabilities define who we are as individuals but instead celebrate the little things that we are good at – whatever that may be – writing, drawing, and so on.  Being ‘chronically’ awesome isn’t forgetting about illness, or the challenges that they pose, however, instead it is about making the most of our situations and to choose the little gifts that we find in our everyday life.  For example, if it hadn’t been for my condition, then I would not have started this blog, and therefore the opportunities to meet all the wonderful and caring people that I have.  It’s about being positive, and never giving up.  To learn more about being ‘Chronically Awesome’ then you can visit the Chronically Awesome Foundation website.

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D is for…

DEALING WITH DISAPPOINTMENT

Inevitably. living with chronic illness, and the debilitating symptoms that they cause, can often leave us unable to go out with friends or family, and have to cancel plans.  This leads to disappointment on both sides – our friends as they were looking forward to seeing us and going out together, and also disappointment for us, the patient too, as it too often seems that living with illness stops us from living life to the full, and cancelling plans is something that if very often too necessary.  Check out a past post that I wrote on the subject after an unsuccessful trip to the cinema entitled ‘Learning to Live with Disappointment with Chronic Illness‘.

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E is for…

E-PATIENT

An e-patient is a relatively new phenomenon but it is a term to describe a person who uses the internet to gather information about a particular medical condition, or someone who uses electronic communication tools – such as web forums, social media, etc  in coping with medical conditions.  It is also said that e-patients are empowered, engaged, equipped and enabled.  I am an e-patient, as I use the power of the internet to both gather information regarding my medical condition, and to also use it to help me cope with the condition itself, and gain support from others.  It used to be said that those who use the internet for health purposes were a hypochondriac, seeking out information to self-diagnose, however, there is new evidence to suggest that e-patients are better equipped with the skills to manage their own condition through the medical information they find online, as well as the support that can be gained online, and these patients are also more engaged with their own healthcare, providing better relationships with their physicians, which become more of an equal relationship in making healthcare decisions.

 

What terms would you use in an A to Z of living with chronic illness?  Send in your suggestions by commenting below!

Will post again very soon for F to J of living with chronic illness….

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