Having read a lot of articles written by, and for, the chronically ill and disabled I have noticed a lot of apologetic speech regarding our disabilities / illnesses and pushing the idea that we must not allow them to define us.
Memes constantly reminding us and disparaging us when we talk about [it] or include our illness in conversations, and acknowledging [them] as part of who we are… For to make reference to it is allowing it to define us!
It keeps cropping up everywhere… “My illness doesn’t define me…” as though we have something to be embarrassed of or must allay any fears that we need consideration for how much our lives may have changed.
I can’t speak for any other chronically ill or disabled sufferers but I find this particularly annoying and bordering on downright insulting.
I am aware that many chronically ill like to use such words and thinking. We are all different and I acknowledge everyone’s right to speak and feel about their lives in their own terms.
I am only speaking about my own thoughts on the topic.
For example, when I find my friends always talking about their jobs or their children or their studies, I don’t feel I should interrupt them or constantly remind them they should not be defined by these roles or circumstances or allow them to define them. That would be rude. In fact if I did say that I am sure I would, and should, be reminded of my need for manners and courtesy. So why isn’t it ok to speak about life as a chronically ill person and the challenges it brings with it? Apparently some roles are more tolerable than others!
I wonder why?
If something happens in our life, an event or role, that affects us so profoundly and takes a lot of our effort, emotion and energy, why is it not ok to acknowledge it or speak about it?
When I find my abilities and life so profoundly changed AND changing I feel insulted and offended when someone suggests I shouldn’t let it define me!!
I don’t see people who have served in wars or suffered losses in tragedies or crimes as being publicly rebuked for having undergone such events. They are not shamed for identifying as being veterans or survivors. Nor should they!
I have never heard of parents speaking about parenthood in a way to demean or minimize themselves. We reward people for trying to be good parents and doing their best while parenting. We don’t expect them to not talk about it or pretend it hasn’t happened. It is a part of their life that is a constant, it is ongoing and it doesn’t have an expiration time. It is a lifetime scenario.
Parenting comes with challenges, difficulties, disappointments and emotional struggles but it is far more socially acceptable to talk about or identify as, whilst these same attributes about chronic illness is something society wants us to downplay, not talk about or hide.
I really don’t understand.
Just because one is seen as far more acceptable than the other.
In fact, I would further argue that jobs, titles and parenthood are all things that people have a choice in and can choose, however chronic illness (especially debilitating illnesses) are rarely something anyone chooses.
Let me consider the word define;
verb: define; 3rd person present: defines; past tense: defined; past participle: defined; gerund or present participle: defining
1 1. state or describe exactly the nature, scope, or meaning of.”the contract will seek to define the client’s obligations”
3 explain, expound, interpret, elucidate, explicate, describe, clarify; Moregive the meaning of, state precisely, spell out, put into words, express in words
“the dictionary defines it as a type of pasture”
4 ◦ give the meaning of (a word or phrase), especially in a dictionary.”the dictionary defines it as ‘a type of pasture’”
◦ make up or establish the character or essence of.”for some, the football club defines their identity
There is nothing that suggests that speaking about illness or describing your experiences is derogatory in any way.
Like anyone else, many of us who are chronically ill would see ourselves in many different ways. Mothers. Fathers. Wives. Husbands. Creative. Intelligent. Loyal. Humorous. Loving. Musical. Artistic. Fun. Talkative. Deep. However there should be no shame in acknowledging how much we are shaped and changed by our illnesses and circumstances, and we should never be made to feel less because of it.
I identify as someone who has life changing illnesses AND many other attributes and I should feel no shame over any of them, and neither should any of my chronically ill brothers and sisters.