Written by CRPS Warrior Marti Ann Ramirez for the RSDSA blog.
After months of living with severe pain, endless doctor appointments, and countless tests, you finally receive a diagnosis: Complex Regional Pain Syndrome (CRPS).
Relief, right? A diagnosis should mean answers. A course of treatment. A plan to get you feeling better and back to your normal self.
Right?
Not exactly.
As you listen to your doctor, begin your own research, and maybe even join a few Facebook support groups, you may experience something unexpected: a sharp gut punch of hopelessness.
Did you hear people talking about learning to live within their “New Normal”? Did you feel instant rage? Maybe you wanted to scream, cry, or eat an entire pint of ice cream?
I get it.
Living with pain every day is not normal—unless you live with CRPS. That is exactly why the phrase can feel so triggering. We cannot imagine how something this painful could ever feel normal. The phrase “New Normal” helps us explain the identity shift that happens when life turns upside down.
At the same time, we are grieving someone we loved deeply: the person we were before pain changed everything. Yes, you are allowed to love who you were and grieve that loss.
- The person who got out of bed without hesitation.
- The person who got dressed and moved through the day without calculating energy levels or pain consequences.
- The person who RSVP’d to a wedding without wondering if a pain flare would make attendance impossible—or whether the vibrations from the music would trigger one.
- The person whose career path felt clear.
- The person whose relationships felt easier.
Here is something your doctor may not have told you:
You are allowed to grieve.
Grieve the life that changed. Grieve the routines that once felt effortless. Grieve the career you lost or had to pivot from. Grieve the relationships that became strained under the weight of chronic pain.
Give yourself permission and time to move through the denial, anger, the endless “what ifs” and depression so you can eventually emerge into acceptance.
The Struggle with Acceptance
Part of what makes the phrase “New Normal” so painful is the struggle before we get to the acceptance phase. The idea of acceptance feels impossible in the beginning. Accepting the normality of pain can sound toxic. It feels dismissive of the whole experience.
Honestly, who wants to accept the possibility of living with severe pain for decades?
Yet, I am here to tell you something equally important:
It is possible to build a meaningful life again.
I have lived with RSD/CRPS since 1995. I was only 17 years old, and my pain was often dismissed with comments like, “It can’t be that bad.”
Over time, I learned something important: living with pain is not normal, but a full and meaningful life is still possible in spite of the pain.
The phrase “New Normal” is not about giving up who you were. It’s about adjustment, about learning how to bridge the gap between what was and what is.
With pacing, a regulated routine, self-compassion, and acceptance, you can find a balanced normal.
Rebuilding the Bridge Through Hobbies
How do you begin? One thing that helped me was rediscovering hobbies.
They are no longer just leisurely pastimes. Instead, hobbies became part of that gentle bridge between who I was and who I was becoming.
Journaling, music, painting, gardening, crafting, reading, adaptive exercise, or even cooking—these activities can bring moments of purpose and joy to hard days.
What are my hobbies?
- Plants. The regular care, watering and simple pleasure of watching them grow gives me so much joy and purpose. The natural process of a plant is a metaphor for learning how to pace without competition.
- Cooking. I have told my husband that it is a meditative experience for me. I have adapted my kitchen and recipes. Learning to slow down and enjoy the process, simmering, tasting and being present in the moment.
Hobbies help to give me purpose on the days when my pain is mild and distraction when my pain is flaring. They built a rhythm that kept me moving when life seems impossible. Your hobbies can quietly support you as you move through the grief process.
More importantly, hobbies quietly taught me one of the most valuable skills in living with CRPS: pacing. Learning when to pause, rest, and return without guilt became part of the practice.
Little by little, I began reconnecting with the spark of myself I thought I had lost. I stopped trying to return to who I had been. After 30 plus years it’s not so much a “New Normal” as just my normal life living with CRPS.
My hope is that you will find power in reclaiming your identity—not just as someone surviving CRPS, but as a Warrior. If you need help just reach out. We are a strong Warrior Community ready to support, encourage and guide you through the hard days.