When you have acute (short-term) injuries or illness, there’s a natural progression to your feelings about the injury or illness. There’s a beginning and there’s an end. It doesn’t last forever and you move on. You may have feelings of anger or sadness, but when the injury or illness has run its course you can move on.
With chronic illnesses, it never run its course. You never really get to move on.
So how long is it OK to be upset, angry or sad? How long until someone tells you (either outright or more subtly, with their actions or attitude towards you) that it’s time to “get over it”?
This is something that I struggle with a lot. It’s appears to be a never-ending cycle. They phases may last hours, days, weeks or months, but they seem to keep going in the cycle.
It begins with sadness and anger – why do I have to deal with this? Why do I have to have my life turned upside down like this? Why can’t I effectively share what’s really going on with me? Why don’t other people understand that it’s constant despite the fact that it’s invisible?
And then it turns to guilt and shame. There are always people worse off than I am. There are always people with troubles greater than mine. I can’t be making withdrawals from the relationship banks to help me deal with my issues without making deposits as well. This phase causes me to push it down – to try to ignore it and carry on like normal. But that can’t be sustained. It can’t last very long before the pain, fatigue, mental and emotional stress gets to be too much and I break down.
Then comes the sadness and anger again. Why should I have to hide what’s going on with me (even if it’s my own guilt and shame making me feel like I have to hide it and nothing anybody else says or does to make me feel that way)? Why should I have to pretend to be fine and go about my life when I’m not? Don’t I have a right to express what’s going on with me and to live within my limits?
And it cycles back around to the guilt and shame. I can’t always feel bad for myself. Who am I to expect special treatment – even if it’s just having my husband do more than his fair share around the house because I’m too tired or hurting to do my share? After all that others have done for me to help me reach my goals and accomplish the many things in my life, how can I retreat and give those parts of my life up and not reach my potential?
How do I balance my own expectations for myself, others’ expectations for me and my physical and emotional limits? How can I remind others of those physical and emotional limits without feeling like I’m a constant whiner? How can I deal with others assuming I should be doing more because they forget or aren’t fully aware – instead of snapping at them because I’m tired of having to defend myself when I can’t do things?
There’s so much advice out there (online, in books and from well-meaning people) to get on with your life, not let your disease define you, not let it change who you are and what you do. How can you when you never know when fatigue will hit, when you’re not sure if you’ll be able to do things you’ve made plans to do? How can you when you never know if tomorrow’s pain will be great enough to cause you to cancel your plans? How can you when you physically can’t do the things that used to be such a big part of your identity and self-concept (like teach all day, hold the heavy SLR camera and lens for long periods of time photographing, sew or do other crafting, etc.)?
How can I redefine myself to take into account all of these realities of my life in a way that doesn’t make me feel like less than I was or less than I should be? How can I help others to understand my re-defined self without feeling immense guilt or feeling like I’m letting others down, or having to deal with issues of others thinking I’ve changed, accusing me of not pulling my weight or that I’m stuck-up or something else?