What no one tells you

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What no one tells you is that who you are changes…..
What no one tells you is that you are continually finding yourself
What no one tells you is how hard you will work to not be labeled disabled…..only to turn around and have to file for disability
What no one tells you is just when you admit to yourself you are disabled someone tells you you aren’t
What no one tells you is what you think you can do and what you can actually do….don’t always meet up

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I constantly feel let down that someone didn’t tell me about theses things. The more I think about these things the more I realize why.
Because really these are personal lessons we all have to go through individually.  These are things  we have to work out ourselves.

Someone can tell us about them but it won’t sink in. They aren’t lessons you can avoid.  As much as we wish we could.

I don’t think people realize that people in chronic pain go through a cycle similar to the grieving cycle. The only thing is we don’t necessarily all go through the same cycle or in the same order even.

Where as in the grief cycle the very fact that you are still going through the phases typically indicates that you are not ready to move on, I don’t necessarily see this as true when dealing with chronic illness. There are so many different aspects to chronic illness. Sometimes I will quickly cycle when something else that I can’t do pops up.  There is a level of acceptance that people with chronic illnesses can get to.  I think with chronic illnesses we have different levels of acceptance.

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I accept I have Fibromyalgia…….I don’t accept it will limit me.

I accept I have Chronic Fatigue……I don’t accept I won’t ever get enough sleep.

I accept I have Arthritis……I don’t accept it will stop me from hugging my daughter.

I accept I have OCD/ADD….I don’t accept I can’t use that to good use.

Anger isn’t around much anymore. It was around alot at the beginning… that quiet bubbling anger that you don’t even realize is anger.That why don’t they care anger. That they don’t understand what I deal with anger. It was a deep dark sneaky anger. It didn’t want to leave so I wasn’t allowed to realize it was anger. Once I did. It was like this big sigh of relief. Okay. This is the way it is. Not everyone is going to understand or be helpful. Once I realized it was anger it was conquered. Okay maybe not conquered but I did have more control over it.

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I don’t think I have ever gotten to bargaining. There wasn’t really anything to bargain with. How do you bargain when what you have is already threatening your way of life? I wouldn’t trade anything in my life in order to not be sick. I liked everything about my life even if I wasn’t aware of it at the time.  I guess for some this is where they might bargain with God or a higher power.  I think I asked that Higher power why a few thousand times. I don’t remember ever bargaining with that higher power. Mainly because when I really look at it, I do believe everything happens for a reason.

I definitely hit depression for quite awhile. It was again something that started so slowly and was so sneaky that it took me awhile to realize it. That it was even sneaking through my antidepressant. I guess it lured me into thinking I was protected. Then it was kinda like how? How did this happen? I didn’t question why I was depressed. It didn’t surprise me at all.

Acceptance. I think like I said that comes in at different levels. Its a work in progress. Sometimes its a daily task, sometimes hourly, even sometimes minute by minute. It just depends on what kind of day I am having.

Dr. Kubler Ross is who came up with the stages of grief. When I looked into more of her as a person, I understand the stages a bit more. They aren’t set up to be neat little categories that people will just go through automatically and be done. That sometimes people will go through two stages at the same time. Or that they will cycle through all of them in a day, in an hour.

They came out not too long ago with a more loose stages of grief.  They understand that not all of us are the same and that we will go through it in our own way and our own pace.

That couldn’t be more true of chronic illness cycling. Give the same exact illness with the same exact symptoms and severity to two people and they will go through these stages in their own way and completely different.

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Sometimes I feel that what people don’t tell you is the elephant in the room now a days. No one wants to talk about it. No one wants to admit that they think that too. Unless they are with others who have similar issues.  When there is no judgement of how you deal with things, there is large amounts of growth. I know this personally. It is my wish that eventually with bringing attention to chronic pain and chronic illness’s that can’t be seen that one day this will be so. Non-judgment and acceptance for everyone no matter what there journey is about.

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One response »

  1. So much truth here! My wife and I have gone through this same mental process (each in our own way as you expressed here) due to her going through a mental and hormonal “illness” that is very real yet undiagnoseable by doctors. I know this is an old post but it’s a good one. Hope you’re still doing well on the path to discovering yourself and fighting the good fight today. Good vibes to you.

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