Navigating the Emotional Journey of CRPS

Introduction

‍Complex Regional Pain Syndrome (CRPS) is a pain condition that can be incredibly challenging to live with. It affects not only the physical body but also the emotional well-being of those who suffer from it. This blog post aims to address the difficult emotions associated with CRPS, debunk myths about the condition, and provide tips for dealing with doubters. We hope to provide support and understanding to those navigating this challenging journey.

Is CRPS Just “In My Head”?

‍No! CRPS is a real condition, with measurable physical changes in the body. It’s not psychological or “all in your head”. Despite misconceptions, CRPS has a legitimate biological basis, and recognizing this is crucial for both patients and their support networks.

Why Don’t People Believe I Am in Pain?

‍One of the most difficult aspects of dealing with pain is that people doubt you. You might look fine on the outside, but feel tremendous pain in your body—a pain that may be invisible to others. Historically, if doctors couldn’t find the cause of a person’s pain, they assumed it was just “in the head.” However, we now understand that all pain has a real cause, even when doctors can't pinpoint it. Pain is not imagined or “just in your head”, and just because pain is invisible doesn’t mean it’s not real.

‍Tips for Dealing with Doubters

• Remind yourself that no matter what others say, your pain is real and based on biology.
• Remember that it is not you they are invalidating; they are invalidating pain that they don't understand.
• If you're comfortable, let doubters know that their skepticism hurts you.
• You don't need their approval to know your pain is real and that you matter.
• Even if pain can't be explained, it's still real. Always.
• Hang in there, and know that you're not alone in this journey!

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Dealing with Difficult Emotions

‍When living with CRPS, it’s common to experience difficult emotions. We mention them here for two reasons:

• To let you know that if you are feeling this way, you are not alone.
• To highlight that there are strategies for managing these feelings. You can learn ways to deal with them so they don’t overwhelm you or hold you back.

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Common Emotions Experienced by People with CRPS

• Grief: Feeling a sense of loss over previous physical abilities and lifestyle.
• Worry: Concern about whether the condition will get better, how you can overcome the difficulty, and how you can function in your life, including financial challenges.
• Change in Identity: Feeling like you are no longer the person you used to be.
• Hopelessness: Feeling despair and a lack of hope about the possibility of recovery or improvement.
• Embarrassment/Shame: Feeling embarrassed or ashamed about not being able to fulfill your roles in the family or society.
• Guilt: Feeling bad about needing others to help you or feeling like you are a burden on other people's lives.
• Loneliness: Feeling a loss of closeness and relationships with friends or family, and spending more time alone.

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Strategies for Managing These Feelings

• Acknowledge Your Emotions: Allow yourself to feel and recognize your emotions, and know that they are common and understandable for people living with a life challenge such as CRPS.
• Seek Support: Connect with others who can listen and provide support. This could include a therapist, friends, family, or peers who are or have gone through tough times as well.
• Mental Health Techniques: There are effective techniques you can learn which will help manage these emotions (we will discuss these in detail elsewhere).

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Reflections From a Patient on Overcoming Shame:

"Shame is a tough thing to talk about. It’s hard to be that vulnerable, that bare. It’s hard to let the world see into those deep dark places. To let the world see your cracks. But I also know I’m not alone. That the shame I have felt in my life, the shame I have felt with my pain, is not so shocking as it seems. I think it likely that many folks who live with persistent pain have felt ashamed of it in some way, at some point along their own pain path, and it’s probably hard for them to think about it, let alone talk about it, too. I didn’t ask for help. I had always been strong, fiercely independent, a problem solver. A bad ass. Tough, strong, fit. So I was too ashamed to ask for help, fearful that it would prove I was weak, unworthy, helpless. I completely withdrew. I rarely spoke to anyone, not knowing how to explain my pain. What it was like to be able to think of nothing else, to go through every minute of every day thinking only of pain, of darkness, of bleak futures, of more pain. On top of all that, and it seems so ridiculous to me now (more shame), I was terrified of getting fat, of losing my fitness, my physique. That was a part of my identity too, after all: being jacked, strong, lean, and tough. I found that things started to change for me when I started focusing on the things that I valued most in my life, the things that mattered to me, the things I found meaningful. When I was able to start doing that I came to realize that I was still that same person, just older, wiser, changed by pain. And we all change over time, we all go through experiences that alter the course of our lives and if we are flexible and persistent enough, we can navigate that course with grace, even if it's difficult."

Conclusion

‍Living with CRPS is undeniably tough, but understanding that your pain is real and valid is the first step toward managing it. By acknowledging your emotions and seeking support, you can better cope with the challenges that come your way. Remember, you are not alone, and there are strategies and communities that can help you navigate this journey.