There are many, many things in our lives due to an illness that gets in the way o life and we have no choice about it at all
- Our pain- We have no control over the fact we have pain
- Our financial situation- due to leaves from work, to reducing hours, to going on disability chronic illness affects us adversely financially.
- Our symptoms severity- Things like fatigue can crush us sometimes.
- Mental illness- We have no control over getting a mental illness, having to cope with it and deal with it in various ways.
- Insurance companies doubting our illnesses and not paying us or screwing with us
- Other people who doubt us and the stigma we face in the outside world
None of these are things we can control. And it may give us a sense we have no control over our own lives and destinies. And that out of control feeling is horrific. Like nothing We do can do anything to affect our lives for the better because everything depends on others… medical professionals and insurance companies. Like they own our lives and we have no power at all in our fate. Because of all these factors that limit us and outside factors we cannot do a thing about but impact us severely. We feel out of control of our own lives. Powerless. And it makes us just want to give up and stop trying.
Like when I was deeply depressed and had unmanaged pain and vertigo… my insurance company bumped me off long term. Despite medical advice and suicide risk (which did lead to my second attempt). Because I Could control if I lived or not. But I gave up with them. I didn’t fight. I was just so tired. So I went back to work. And I suffered. And I failed. And I felt my self-worth drop even more because I was so damn useless. Just because they forced me to do something I physically couldn’t do and I just couldn’t fight them on it because I was so depressed and tired. That is what powerless feels like. Like you can’t fight. And you can’t win. And nothing will ever get better.
I lived in that darkness for so long when my depression wasn’t treated. And that is a hell I never, ever want to experience again.
And I want to say we are more than our illness in so many ways. We just have to encourage those ways so we can help develop a new sense of self and a new self-identity.
And it should never cross our mind, ever, never, ever
That we are to blame for the things we cannot control. There is no shame in being ill. No guilty. We are made to feel this way, though, and it can destroy our self-esteem. But it is not our fault. We are not to blame. We are not personally failures due to what we cannot due to illness.
Here is a poem I wrote inspired by the acceptance and development of my self-identity
And that poem is about what I have been thinking about in the growth we have in our chronic illness journey. Things we do have control of. Writing our own story the best we can
Things we do have control over
- Developing our resilience to deal with the adversity of chronic illness and the unpredictability
- Developing acceptance. And this doesn’t mean giving up. Just accepting this is the pain and the illness you have to deal with. And wanting to seek treatment while at the same time trying to have a life.
- We cannot control the pain, most of the time, but we can control our reaction to it. Our automatic response. Find new methods of lowering the suffering that comes with pain. Be it meditation or biofeedback or whatever works. And we can do our self-care on bad mood days and bad illness days and bad pain days.
- And we can nudge out limits just a little bit out of our comfort zone. To socialize. To go out. With a plan and medication and preparation. To gatherings, events and many other things with limitations.
- And we can seek out things that improve our wellbeing and things we have a passion for that fill the time.
- We can do gratitude daily and have self-compassion for ourselves on bad days
- We can focus on what we can do and Not focus on what we can no longer do
And that is what we try to do. That is the struggle. But that is where our control lies. In our story, in our self-identity and our sense of self. This is where we have our power. This is where our mightiness and strength is. But it is flimsy. We have it. Then we don’t. We have it and then we punish ourselves again for being sick. Acceptance and then… anger, denial, self-loathing, blame. We hold it for a moment and it slips away. I guess the name of the game is holding onto acceptance longer and improving quality of life inch by inch along the way.
And you know I doubt the healthy comprehend all this adaptation, maintenance, and things we do to survive with chronic illness and chronic pain. It is truly life-altering in every sense.
Coping never ends. And this can be exhausting sometimes. All these things we have to do to just manage the day. Our self-care we do on those horrible bad days and we cannot function. Sometimes, man, I just need a mental wellbeing break day from the constant struggle.
I want to believe and I want to hope, after my dark depression, that I can improve my coping and the way I see myself with illness. And I want to believe this venture will help me survive the really bad times. I want to believe I have some control over my self, if not my illness. And every day I struggle I try to think good things about my value, my worth, and who I am with illness.
And it is a struggle. Because we have intrusive thoughts with illness. We have self-hate and self-stigma and all of this whittles away at our sense of self, how we value ourselves and our self-worth. Which makes combatting this constant. It makes our mental and emotional wellbeing just as valuable as our physical wellbeing.
I am not an optimistic person. I am naturally a negative person so I fight at my wellbeing when I just feel that my worth is less than others. Nothing wrong with being a pessimist… we are actually good a problem solving due to thinking about all those possible outcomes we feel might happen. And so we can deal with adversity and challenges because we have already thought about it. And I have to tell you the times I have been optimistic about treatments and they didn’t work… it crushed me. But when I go in thinking ‘just give it a go and see what sort of response I have. And think of alternative ideas if nothing happens’. Realistic is what I am for. Not my tendency for negativity. So and I am doing a lot to work on my resiliency and sense of self. I want that self-worth and self-esteem again. Just want to feel better about who I am without thinking about what I cannot do.
I want to focus on wellbeing and quality of life. I don’t care if I have to crawl by inches to get there. I know there will be steps backwards. I know there will be downturns in my health. And times I need to just recover from those. But then move forward, slowly, ever forward.