This is one of those topics that drives me to distraction. I have blogged about it before. I bet my opinion about it shifts every five years when I do because it changes the longer I am chronically ill or my perspective changes.
You are definitely not your chronic illness
And you definitely are.
When I say ‘I am not my chronic illness’
Part of me Wants to say this. I like the idea a whole lot. Mostly because I LOVE the idea of being in complete denial of my disability and just ignoring it’s impact on my life so that I can pursue my ambitions as I desire. My brain loves that idea. Of course, every single time I try and do that it is a massive mistake on my part because, oops, I have some serious limitations I can’t actually ignore and, oops, if I do ignore them I get significantly worse and completely crash and burn. Yeah, denial is just awesome that way. To this very day, I still get tempted by denial.
So this doesn’t seem all that accurate, does it?
Self Identity, not literally
People warn against making your chronic illness part of your self-identity. Do not define yourself by your chronic illness. And there is actually a valid reason for this. When you think of your self-identity it is Who you think you Are.
- I am a writer
- I am a daughter
- I am…
I can’t actually say:
- I am pain
- I am a migraine
- I am vertigo
Is that really a core identity you want to exemplify? Not really. We all know focusing on any symptom just aggravates it. If we truly defined ourselves by illness and immersed ourselves within it- well, that would be contrary to coping with it. I wouldn’t recommend that method and for the amount of times we hear this ‘do not define yourself by your illness’ business you’d think many of us do but certainly I don’t see that in people or how they cope or in any of their coping strategies.
Maybe on a severely bad pain I can relate to the feeling of being One Big Massive Ball of Pain- but I am not literally a big ball of pain. I am just non-functional that day. Temporarily out of service. Online sometime in the future whenever the pain goes down to ‘normal’ baseline pain levels. I certainly wouldn’t self identify with pain. It is more something I actively try to distract myself from so I do not focus on it. Or various other pain management strategies that help me live with it in other ways.
Most of us actively Don’t either literally identify with illness directly. Most of us do the exact Opposite, in fact. We think of ourselves as Me and then That Illness, as this weakness/disease/malfunction in the Body, separate from ourselves. Like a mind/body distinction. Or in the case of mental illness a sort of me vs. mental illness battle. So we can be very dualistic in our thinking. And so do not put our illness into our core self-identity at all but rather contrary to it- that thing that Impedes our Self being-who-we-Would-Be. Illness basically blocks who we are. That is why ‘what-ifs’ plague us. If I were not ill- I would____ *fill in the blank*. It doesn’t define us in that sense. It obstructs us.
Sometimes we see it as this force controlling our lives. Or something we are in constant conflict with. Or… many things. We Have it but we do not own it as part of our core identity.
It is a very common mistake for people to make when they hear us talk about our chronic illness. We ‘talk’ about it ‘too much’ so we much ‘think’ about it ‘too much’. Not realizing all the things we do to cope with it. People and even medical professions then come up with trite things to say like ‘Don’t identify with your illness’, ‘You are not you illness’, and ‘Don’t let your illness define you’. We focus on overall well-being a lot more than the average person ever thinks about so if anyone is going to avoid not letting it define their lives, we got it. We often focus on ways we are so much more than what we used to do for work, more than our chronic illness, more than society’s definitions of productive… we construct new self-identities, value systems, and work on our self-worth.
Chronic illness and disability are not Literally part of our Self-identity. Okay. But we are clearly missing something here too. Like impact. Like a powerful influence on our self-identity. Like a whole wide spectrum of Stuff is missing if I use a blanket statement of ‘I am not my illness’. Clearly, something some chronic illnesses are disabling and extremely impact-ful on our lives.
Physically who we are, technically, our chronic illness
So maybe a chronic illness isn’t literally part of our self-identity but it is part of our body. And we are our body. We can separate mind from body intellectually. I can say pain is something inflicted on ME. But it isn’t. It is something I have in the body. Chronic illness is a malfunction of the body in some way or another. And all parts of the body including the mind are rather Me. So chronic illness is a part of me. Literally. Dualism is a way I may think about it but really it is all just me in here- I am my body, my mind, my spirit.
It’s impact on my body (and therefore mentally and emotionally because it impacts my brain) impacts how I am in the world. It also impacts all aspects of who I am. Everything feeds into everything else.
The whole reason people say ‘don’t identify with your illness’ is because they do not want you to own it as a part of your essential being like it makes it static, unchanging, or indulging in ‘sick behaviours’ and unable to adapt or cope or progress. Fixated on it.
Like by me saying it is a part of who I am and my existence in the world all of a sudden makes me think it is ALL I am or will EVER be. Huh? No one said it is every single part of who we are. Or that it would be every part of who will be in the future.
Rather, for me, it is a vital part of accepting my chronic illness and disability, understanding its impact, and my limitations, and enabled me to get out of denial to cope, adjust and live in the world in a way that works for me. I understand my body, as a whole, as an embodied being and by doing so I understand its current limitations. That my body impacts my mind, my mind impacts my body, and everything is all connected together.
Chronic illness and disability impacts my entire life. Obviously it impacts how I interact with the world and it has altered how I cope, adapt and deal with adversity. It impacts how I plan my day by pacing. What I can do and can’t and the price I pay for what I choose to do. It defines my limitations and how I do specific activities. It has altered my perspective on many things as well. And certainly it limits my participation level in the world around me whether I like it or not. I can’t be oblivious to its impact because I have to consider it all the time in my actions. If you Have to consider something all the time before you do anything it rather is pretty significant factor in our lives.
However, just because I believe it is something impacts who I am and my life doesn’t mean I am resistant to change. In no way does this mean a person is somehow ‘fixating’ on their disability or illness such that they cannot comprehend improvement. Accepting chronic illness or a disability are this massive impact on us doesn’t mean we are somehow ‘stuck in it’. Well, we are in the sense it isn’t going anywhere. But we are not stagnant. Most of us are rather open of adapting and changing and adjusting our coping in various ways. Maybe sometimes we suck at coping. Sometimes we do. It isn’t exactly an easy process all the time. But we continuously and persistently persevere. And then… sometimes we find a really effective coping balance for a bit.
I think understanding chronic illness is a part of my existence, and my body, factored into:
Having a level of acceptance that my disability enables me adapt and cope in ways denial would never allow. Acceptance doesn’t mean lack of change. It means understanding the reality as it is now so I can live as I am now and also continuing to, one would hope, adapt, cope, and improve my overall well-being.
Living with Limitations
If you are aware of your limitations that means you are also keenly aware of how you are able to do things. In other words, doing specific things differently in order to do them. Pacing activities so you can do them. Using mobility devices or other disability devices to assist you in doing activities so you can do them. Such as when I accepted I needed a cane to get around. I understood how vertigo was impacted my mobility, therefore limited my activities so I adapted to that by getting a cane. Knowing limitations makes us aware of all the space around those limitations we can fit things through- and when we can’t, as the case may be.
I am also aware limitations are not set in stone. Limitations like chronic illness, fluctuate over time. There are times I may test them. Nudge them a little. Just to see if I can stretch them. And when it is time to recover and rest.
To sum that all up, sure, we can say within the confines of ‘self-identity’ chronic illness is not something we are. I am not defined by illness. I define ‘who’ I am in so many ways. In terms of an embodied being in the world, physically, yes, chronic illness is indeed a part of who we are and impacts other parts of who we are (mentally, emotionally and so forth). So depends on how you look at it. Not in some sort of way that defines our existence in some static way that limits change, possibility, or the future. But in the sense that we have a body that has a chronic illness and we accept this has an impact on who we are, how we exist, and makes for certain limitations.
By doing so it can help us have acceptance of our lives, our bodies, our needs and cope with those, adjust to those needs and live within those limitations. We are self-aware really. Aware of our needs. Aware of our limitations and how to live with them. Aware of our coping strategies and when to use them. Self-awareness does not mean ‘self-limited’ – if anything being aware of how chronic illness impacts us and limits us, makes us aware of ways to do things, the ways to move with our limitations, the ways we pace, the ways to accommodate ourselves, the ways to use devices to assist ourselves in every day things… in ways to improve our quality of life.
- I am an embodied being with chronic illnesses.
- They are a part of this body.
- I am this body.
- And ‘I’ is not something separate and removable from this body (beliefs may be different on that one but for the sake of this post, we can say, while we are alive, mind, body and spirit are all one cohesive whole if you believe in spirit/soul.)
- Since I can’t detach myself from my illnesses, and think of them as some sort of external enemy to ‘me’, then I must accept them, their impact, and limitations.
However, it is a matter of how you think about chronic illness. If thinking about it as not part of your sense of self helps you cope better, then I think that is fine. If thinking of it as part of your being helps you cope better, then That is fine. I think there is a case for both perspective in how we wrap our head around it for our own path to acceptance and coping. It is just never good when Other people tell Us how to think about it. Clearly, we cannot deny something that impacts all aspects of our lives though. Obviously, part of coping is trying to have a semblance of a life with chronic illness- thus we do not want illness to define our lives, we want a quality of life and some sort of life satisfaction. We all aim for that although it really is impacted by our actual Quality of Life levels.