Written by CRPS Warrior Marti Ann Ramirez for the RSDSA blog.
Does this sound familiar? You were injured. You were supposed to heal. When you didn’t you went to the doctor expecting answers. After all, they spent years in medical school, so they should know how to diagnose and treat you. That is what we expect from “reality.” Right?
Instead, you were told you can try this or try that, but there is no cure. This pain? You are supposed to live with this pain?
Did you want to scream, “Heck no! That’s impossible!”? Yet, that is your new reality, and you are supposed to just accept it?
The Cost of Faux Diagnoses
How many doctors did you see before receiving your RSD/CRPS diagnosis? Most of us saw at least one before we were properly diagnosed. That one didn’t just have zero answers; they carried an implication that the pain was in our heads.
I know that feeling. I will never forget the look when the so-called specialist looked me square in the eyes and said:
“You will be in pain until you realize you aren’t in pain.”
It was cold and brutal.
Trying to navigate that implication? That faux diagnosis began to shape how my family and friends viewed my pain. Instead of offering support and empathy, I felt their critical eyes watching for proof that I was somehow exaggerating or faking it. I lost credibility because of a doctor’s diagnosis.
I often imagine the “What if” scenario. What if, instead of saying it was all in my head, the doctor simply stated he didn’t know what was causing my pain? What if he admitted he didn’t have answers instead of surmising I was faking it? The truth is, his initial diagnosis caused doubt within my support system.
A Relief and a Burden
That’s why the diagnosis of RSD/CRPS was equally a relief and another burden.
● A relief to have a diagnosis that legitimized the burning pain I had been experiencing along with a myriad of bizarre symptoms—a cold limb, swelling, and bedsheets that somehow felt both like a lead weight and sandpaper against my skin. Symptoms the first doctor ignored suddenly mattered.
● A burden because reality had changed. Learning that I would not be going back to my active life meant I couldn’t trust my body. I surrendered myself to my doctors, trusting them because I had no other recourse.
In my experience, denial and doubt were thrust upon me by others and their perspectives of my pain. It created an isolation chamber where I didn’t feel like I had anyone I could truly trust and lean on.
The Many Faces of Denial
Today we use the term Medical Gaslighting to describe the experience of doubt that was cast around me. Others with RSD/CRPS might experience this differently. They might respond to the diagnosis with fight-or-flight behaviors; continuing to look for another doctor in hopes for different answers, refusing therapies because they are already in so much pain, declining to use assistive devices, pushing too hard or afraid to move their body at all.
Another example of denial is in how we talk about our pain. When I tell a concerned friend that “I’m fine,” I am creating a distorted reality that undermines the physical and emotional toll of my pain. Maybe we believe we are trying to minimize our pain for our loved ones’ comfort. Denial becomes our mask because explaining reality is scary when we don’t know how it is going to be received.
The hardest doubt is the one where we cannot imagine being able to live a full and meaningful life with this pain. Receiving a diagnosis of RSD/CRPS is a roller coaster ride. The diagnosis begins a new cycle as our hope of becoming pain-free and returning to our old lives collides with this new reality.
This is where many of us firmly enter the denial stage of grief—not because we don’t believe the diagnosis, but because we don’t want to believe what the diagnosis means for our life.
Finding Something Tangible: The Power of Journaling
Being doubted by others is hard enough, but second-guessing your own body’s ability to get out of bed and go about your day? That is why this is so hard.
Learning to live with this pain means we need something tangible to help us connect with our new reality. I am a firm believer in journaling. The act of putting it on paper (so to speak) helps me focus my thoughts. Through it, I can:
● Track my symptoms and plan my day
● Express my frustrations and know myself more deeply
● Hold myself accountable while practicing grace
● Identify thresholds for pacing: See where I can aim for 1%, push for 10% more, or recognize when I need to pull back
Overall, it allows me to see my progress. Journaling is a tool that helps me see my reality more clearly. What if that clarity can be a stepping stone to help you across the bridge as you learn to discover how to live with chronic pain?
Accessible Alternatives to the Notebook
Are you interested in exploring journaling but need more options than just grabbing a notebook? If dyslexia or pain in your hands and arms makes the traditional pen and paper frustrating, you can still partake in this tool! Consider these alternatives:
● Text Messages: Use your phone to send yourself quick text notes throughout the day. This is really helpful for brain fog too!
● Voice and Video Memos: Record a quick video on bad days to remember exactly what you need to tell your doctor. On good days this tool serves as a reminder to your future self that brighter days are possible.
● Pictures: Sometimes a picture really is worth 1,000 words. Make a commitment to start taking pictures daily or weekly. Let them tell the story of your life.
I love being able to look back and see how many more good days I actually had! This helps me compare what I believed I was living in the moment. It is a reminder that I always overcome 100% of my bad days.
A Gentle Reminder
As you learn to manage your feelings of denial and doubt, I want you to remember to be kind to yourself. You are not alone. Every CRPS Warrior has had to face their own version of this reality.
What is reality?
Reality is that your life has changed.
Reality is that this process takes time. It’s non-linear and you are actively processing a new life.
Reality is that you deserve grace as you deal with these emotions of grief.
Remember, you don’t have to suppress your emotions. Give yourself permission to process at your own pace.
Removing the mask, wanting to be seen, can leave you feeling very angry.
It’s okay to not be okay.