Chronic illness: That isn’t me

I am a shadow of who I could be. Who I would be without chronic pain and chronic illness.

Pain and illness changes us

What this is, is the distinction between who you are as a person and how you are as a person with chronic pain and chronic illness. And how they do not match. That I wouldn’t be the same person without chronic illness as I am with it. And, of course, this is very valid. Our experience of chronic pain and illness does cause changes. Just the capacity to cope to illness is a massive change. But not everything is due to the chronic illness and pain, but rather how we have adapted to that stressor and our emotional reaction to pain radiating into how we deal with reality. And that, in many ways, any massive stressor would have caused the same changes. Although, those changes tend to be temporary.

Chronic illness and chronic pain This isn't me

But it is our core personality that often dictates, very early, how to cope with the constant stressor, in positive and negative ways. It dictates literally how we may typically respond to any stressor. Then as time passes we become increasingly aware to these coping strategies and try to adjust them. And whether you realize it or not our capacity to realize negative coping strategies and adjust them is a level of self-awareness people rarely have. How we are different from the person before is the result of adapting to a constant stressor, our automatic coping strategies, and then our realization and changing of those coping strategies. That is significantly different from who we were. That person, with a similar personality, who reacted to stress without an understanding of why they were reacting that way. Who thought it was perfectly normal to react that way, given our personality. And never having a stressor magnifying those reactions.

I am articulate

My brain fog and migraines are not

I am introverted, but I love to laugh about pretty much everything

My pain is stoic and withdrawn.

I love puzzles

My brain fog and migraines definitely have no idea what to do with puzzles

I am a perfectionist

Hell, I am just glad with chronic illness to get anything done, let alone make it perfect.

I am affable and easy-going

But completely frustrated, angry and depressed with chronic pain

I am absentminded

Yeah, still absentminded but like if absentmindedness took crack.

But actually, we are still that core person. It is just a reflection of who we are under enduring and constant stress. And it is how our core personality is affected by coping with extreme stress. (see personality and chronic pain) For example, I am quite introverted and that trait actually tends to lead to much moreĀ retreating, avoiding and self-blame than the more extroverted person who actually tend to develop some good coping strategies (While other traits affect other things and lead to other coping strategies). It is how I innately have dealt with stress. But magnified and lasting indefinitely because the stressor is constant. Chronic illness is how you are if the stress of an experience on you mentally, emotionally, and physically never ends. And the ability to adapt and cope with the consequences of that. Such as being very aware pain makes me retreat, avoid, and self-blame and trying to adjust accordingly.

On the other side of the coin, is the emotional reality of chronic illness and pain. For example, I am a pretty affable person and I very rarely get angry. But when I am in a lot of pain and trying to function through it, I am angry. I am angry I have to deal with the pain. I am angry I have to function through it. I am angry people have such petty problems when I am suffering so much. So if people were telepathic, well man, they wouldn’t like what they heard. When high pain endures though, my brain goes to its dark place and I do have depression. Our emotional reality affects how we deal with the world. If I am angry, sad, frustrated, anxious… I can react to the world differently. And pain and suffering always have an emotional reactions so we always have to deal with this flux. And we can take out what we are feeling on others sometimes without even intending to.

What we have to think about is:

  • This is who we are under extreme stress. Our personality actually has an effect on how we cope with stress. It is still us though, but who we are with a lot of physical, mental, and emotional stress. And it should be said that personality adapts to our experiences, so it does over time change. It isn’t likely someone who is introverted will become extroverted, but they could become more introverted and have a problem with being withdrawn from the world and retreating. Or less introverted like my tendency to engage with people with humor as a self-defense mechanism. I am less introverted and reserved by using that coping strategy, but it is a direct response to trying to distance myself from suffering and letting others see that suffering.
  • Our experiences, literally every single one, has caused us to change. I am not the girl I was when I was 20, but I think I am similar because I have a cohesive self-identity. But I don’t. That fluxes with us. Pain and illness are intense experiences. It is only valid and true that they change is in many profound ways; both negative and positive. So yes, pain and illness change us profoundly. But every other experience I have had has also changed me. I just am not the same person regardless. To compare myself to that other person never makes sense.
  • Our emotional reaction to pain and suffering can impact how we react to the reality around us. Like I have always said pain has a radius. Our illness affects the world and people around us in many ways. From the stresses of being a caretaker… to how we deal with internal emotions in the world. This is why we often have to consciously work on our emotional well-being. It affects our perception of chronic pain and illness, it affects how we cope, and it affects how we react to reality. Again stressors like pain and illness always have an emotional reaction so we are always dealing with the emotional fallout. Like we would under less stressful situations but magnified by the fact the stress endures.
  • We often think of our limitations as affecting who we are as person. And that simply is not the case. (Chronic illness and self-identity). I want This. My body Won’t Let me. And therefore my illness makes me feel guilty, worthless, and like a failure as a person. But who we are isn’t what we can do. Unfortunately, we feel the restrictions of it deeply. Because who we are as a person wants to engage in the world in a certain way, and we can’t. Who we are then is impaired by our inability to engage in the world the way we want to. I can’t stress enough putting value in what we can do. Anything that gives you a sense of self, a sense of accomplishment, and some sense of productivity has a vast amount of value when we are limited from doing the things we feel we should do, or want to do, but can’t. I talked to my psychologist and he told me I do not value the things I can do as being ‘as important’ as the things I cannot do but want to. And now that I value those things I have much more self-worth.

We are the same core self

And

We are entirely different.

And

That would be the case regardless to enduring a constant stressor, but in different ways.

You never could return to that previous person. They do not exist anymore. And even without pain and illness they would be gone anyway.

But, goddamn it, we have adapted and survived because of the ways we learn to cope and continue to find other ways from a life-altering and enduring, profoundly disruptive experience that doesn’t have an end date. And that, my friends, is something I am glad about. That previous me had extreme difficulty with the way I reacted and coped with chronic pain and illness. The me now, with More pain and illness, copes with it better and will continue to find ways to improve that. But there will always be bad days.

However, we all know coping is a continuous process. And sometimes we do not cope well. And that isn’t a failure, it is just natural. That is why it is important when we struggle to engage in self-care. There are bad days, weeks, years even where we really struggle with coping. But we get through it. And we persevere. Because that is what we do.

And really this is a story about a little self-compassion. We are going through a lot to just get through the day. And we should tell ourselves how this matters. It effects us in many ways. And we have to be kind to ourselves and never compare ourselves to our past self, our could be selves, and other people. This is a journey about surviving and enduring while giving ourselves the best quality of life we can. And knowing we are enough just as we are. We have to forgive ourselves for self-judging who we are. We have to stop mourning and grieving who we were. And start accepting this life so we can embrace the way we can be in the world.

Other posts to read:

Chronic illness, identity, and embodiment

How does your illness define you?

Chronic illness: Savouring simple pleasures
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