How much of your identity revolves around your illness? Around your pain?
How do you describe yourself? If I asked you to describe yourself to me right now, what would you say? Would you include your pain and illness in that description?
When you live with chronic pain, sometimes that pain is all you can think about. When you think of yourself all you can think about is the pain, and how that pain has changed your life. You think about how it impacts your ability to be who you really are – a spouse, a parent, a student, a teacher, an employee, a boss, a human with feelings, and hopes and dreams. You forget that you are so much more than your illness.
Has pain become your identity?
One of my psychology professors also worked as a counselor at a pain clinic. One day during class (Psychology of Personality, I believe), he made a comment about patients who were dealing with chronic pain. They would come in rating their pain a 10. They were obviously in pain and could barely get out of bed when they initially came in. Then they’d come back in after they’ve had a pain pump installed, going on and on about how they felt the best they’ve felt in years, yet when asked how they would rate their pain say they are still at a 4. The professor made it clear that in his opinion they were obviously free of pain but had developed a “pain identity” where they couldn’t imagine life without pain, so despite being pain-free they still reported a 4.
You don’t know how good a pain rating of 4 feels until you’ve lived at a 10!
As someone who lives with chronic pain, I see this situation differently. I imagine you do as well. What I see is that after living life at a 10 for any length of time, a 4 feels really damn good. I can laugh and dance and play at a 4. I can ignore the pain at a 4 and not even think about it, until I’m asked about it, or until I do something that causes it to spike up. Then I stop and think and yep there’s still some pain, but I’m OK, thanks for asking.
While I disagree with this professor’s view of his patients, of those of us living with chronic pain. I agree that sometimes we can take on a “pain identity” and allow the pain we live with to take over our identity. When that happens it can be difficult to remember who we are beyond the pain. To accept that there is more to life than the pain, and not let the pain control every thought and decision.
#Spoonie How much of your identity revolves around your illness? Around your pain? Share on XWhen we get focused on our illness and pain it can take over our lives. But, we are so much more than our pain. Even with the pain you can still be a great friend, great parent, a great spouse, a great student, a great employee, a great boss, and just a great person. You just may have to do it differently than you did before. You won’t be the one doing every single chore around the house anymore and doing everything for everyone. You won’t be the employee that works 60 hours a week and goes out of your way to show how awesome you are. But, you will still continue to do the best you can and be the best version of you that you can be. You are still amazing. You are so much more than your pain.
You are so much more than your pain and your illness. Don't let those things become your identity. Share on XIt’s time to check in and think about who you are, to consider how much more there is to your life than just pain. Let go of the ideal image of who you think you should be and think about who you really are, and how great that person is. Think about the things you love and the ways you can still do those things.
Don’t base your identity on that perfect person, perfect mom, or perfect spouse you have in your mind. When you get focused on perfection, you are focusing on an ideal that can never be achieved. Even all those “perfect” people you think you see out there have issues, that you aren’t seeing. You are only seeing what they want you to to see.
There is so much more to you than pain or perfection. There is a happy medium. A place where you look at yourself and value yourself for who you are. Stop beating yourself up because you can’t attain some false view of perfection, and stop beating yourself up because you are suffering from an illness you didn’t create and can’t control. It’s time to accept yourself for who you are, for the great person you are beyond the pain and without perfection.
It’s time to accept yourself for who you are, for the great person you are beyond the pain and without perfection.. Share on X
Who am I?
I am a partner that does my best to do my part in the relationship.
I am a friend who is there when I’m needed.
I am a traveler that enjoys seeing the country and the world.
I am a daughter who loves her parents very much even if I can’t spend as much time with them as I’d like.
I am an entrepreneur that has done amazing things and I will again.
I am a writer that has been published multiple times.
I am a creative person.
I am independent.
I happen to suffer from a chronic illness that impacts my life and has taught me the importance of pacing, of asking for help, and of knowing my limits. I don’t always live within my limits. Chronic illness has caused me to adjust how I do things, and what I prioritize. But, it isn’t my focus. Pain may affect my identity, but it is not my identity.
So, Who are you?
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Hua Alderson says
Hi Julie:
Great post and I enjoy it very much. For me, the most important lesson from chronic pain is to find a good pain management doctor and get a diagnose. I struggled with chronic back pain for four years, and finally found a wonderful pain management doctor who gave me a clear diagnosis, helped me overcome my pain in a month, and didn’t charge me a single penny! I can’t help thinking there are millions of chronic pain patients out there who simply need a good doctor and diagnosis. Love.
Hua
David says
Compared to when I had my health, I’m in an indescribable hades I desperately want to be freed from. Compared to where I was a few years ago, I’m in absolute bliss. Everything is relative. Not to mention the pain scale, OMG.
Julie says
You are so right about all things being relative. If we can keep some perspective in our view it really helps make life much easier.
Sean says
Awesome, Julie! I love this article. I get focused on my pain so much. However, I like some above don’t agree with your teacher. My 2 I can jump up and down and play with my kids; I would love to be at a 2 all the time. That’s just because it doesn’t happen very often. But, I love the view of your article because I do define myself with this pain. I try not to but I do. I “was” so much more before fibro; just the ability to keep on going I miss greatly. But, that doesn’t mean I’m any less of a person because I can’t. Sometimes people around us can make us think that we are less because we can’t do things if we take it to heart; but it’s not true.
Thanks!
Julie says
Sean,
I couldn’t agree with you more. Your comment put a smile on my face. You are right we aren’t any less, we are just different than we were and I think that’s probably the most important thing we can remember.
ChronicMom says
Wow, I can’t believe someone who works at a pain clinic didn’t know better. When I’m having a low pain day I’d say my pain is around a 5 and it’s not because I’m hanging on, but because I’m just in that much pain on a day to day basis. That being said, I agree that it is easy to let pain take over your life. It’s easy said than done to move past it and find other things to focus on when all you can think of is pain.
Abigail @ipickuppennies says
I agree with your assessment. People with chronic problems don’t understand relativism. I don’t have pain, but I do have pretty severe fatigue. For awhile, I was on meds that helped. I felt way better. But that just meant that I could safely run errands a few days in a row. Or stay out late. So if you asked, I’d have said I felt a hundred times better. But that didn’t put me on par with the rest of the population.
But he is right that we start to define ourselves by our limitations. I probably would talk about my fatigue in describing myself. But I like to think that it’s more about my journey to accept my conditions (fatigue and bipolar 2) and become more whole. Rather than having a side I was constantly fighting against. That’s what I’d tell myself, anyway.
Julie says
I think fatigue works the same way, at least for me it does. The amount of fatigue varies but no matter what I’m never at the level of energy I had before Fibro.
Donna says
I love this post. It is so true. I have stopped to question “am I actually
in pain?” as I had been rating my pain at a 2 out of 10 for a few weeks (though is has sneaked up over the weekend). But even with this low number, muscular aches are still there but they are so mild they have not affected me. I can totally get what your prof told you but i think we can function incredibly well with low levels of pain because it is such an amazingly positive difference. I have had a couple of fleeting moments where I was in no pain and my attention was brought to it immediately because it was so incredibly bizarre!! It felt so alien to me.
I think it is easy to be that person with chronic pain and let it rule your
life. I don’t look at my limitations as being about pain or fatigue anymore. Of course they are at the forefront of why I choose to do/not do things. But I prefer to think of it as making decisions each day that help me to feel as well as possible. I make decisions that are right for me.
I am more than my illness. I am a writer. I am a wife. I am a friend. I am a daughter. I am a photographer. I am a crafter. I just have some limitations but that’s okay.
Julie says
Thanks Donna. Obviously this topic has been high on my mind this week.