What I wish doctors knew about helping people manage pain is that there seems to be a lot of disconnect and lack of communication in the healthcare system. When I was in acute care, I was prescribed a number of medications that nobody really discussed with me. They just gave them to me. When I found out I was on methadone, I asked what the plan was to wean me off of it because I didn't want to be on it long-term. Nobody seemed to have an answer. When I was discharged from the hospital, they took me off methadone cold turkey and sent me home. After I got home, I received a phone call from an outpatient substance abuse treatment clinic. They told me they would be treating me for methadone dependence, but the earliest appointment they had was three weeks after I had already been discharged and taken off the medication. They actually said they were going to put me back on it so they could wean me off it. I remember thinking, if this was something that needed to be addressed, why was...
When I was in acute care, I was prescribed a number of medications that nobody really discussed with me. They just gave them to me. When I found out I was on methadone, I asked what the plan was to wean me off of it because I didn't want to be on it long-term. Nobody seemed to have an answer.
When I was discharged from the hospital, they took me off methadone cold turkey and sent me home. After I got home, I received a phone call from an outpatient substance abuse treatment clinic. They told me they would be treating me for methadone dependence, but the earliest appointment they had was three weeks after I had already been discharged and taken off the medication. They actually said they were going to put me back on it so they could wean me off it.
I remember thinking, if this was something that needed to be addressed, why wasn't the appointment made before I left the hospital? Why wasn't there a plan in place? Instead, I was sent home, taken off the medication, and then told I'd be seen three weeks later.
After I was discharged from the hospital, I also talked with my primary care physician about pain management. I told him that gabapentin was giving me brain fog, and I asked if there were any holistic pain management doctors. He suggested cognitive behavioral therapy, and I said, “Excellent. That's my style. I'd rather manage things between my ears than just swallow another pill.”
Another issue I had was with some of the medications used for pain management. I was given medical-grade fentanyl, and I had all kinds of hallucinations. It was not a good experience for me.
The next thing I knew, I got a phone call from a family and divorce therapist. I was completely confused. I wasn't looking for help with family issues. I was looking for someone who understood trauma, limb loss, grief, and how to adjust to a completely different life after amputation.
Once again, there seemed to be a breakdown in communication. I didn't end up seeing the type of therapist I was actually asking for, or any therapist for that matter. When you're in pain, healing, and dealing with your new life, you don't have the energy to deal with a failed system. Doctors should be more specific when making referrals. Meanwhile, I was left trying to figure out for myself how to move forward with the trauma, grief, and emotional pain that came with losing a limb and losing the life I had before.
Pain isn't always physical. Sometimes it's the mental and emotional pain that needs attention too. In my experience, a lot of time was spent trying to navigate these disconnects and figure things out on my own when I was already dealing with a major life-changing event.
I was also given a referral to a pain management doctor, but after speaking with another amputee in my town, he told me that the doctor basically told him he would just have to get used to living with pain for the rest of his life.
After everything I'd already been through, and while I was still healing and still in a lot of pain, I didn't want to spend the time and energy finding a ride to an appointment with someone who might just tell me that I'd be in pain forever. I didn't want someone taking away my hope or planting that kind of negativity in my subconscious mind.
One of the biggest things I wish doctors understood is that words matter.
When you're talking to someone who has gone through a traumatic injury, lost a limb, lost their independence, and is trying to figure out how to rebuild their life, your words carry a lot of weight. If you tell someone they're just going to have to live with pain for the rest of their life, what are they supposed to do with that information?
What I wanted was information about options. I wanted to know what I could do to help myself. I wanted alternatives, strategies, tools, therapies, and things I could work on myself. I wanted hope.
Instead, a lot of what I experienced felt like a system that was focused on medications and referrals that didn't communicate with each other. I was prescribed powerful drugs, referred to services that weren't what I asked for, and left trying to figure out many things on my own.
To me, there needs to be more focus on helping people stay well, not just prescribing medications. There needs to be more attention paid to the emotional and mental side of pain, especially after a life-changing injury.
Most importantly, doctors need to remember that words matter. You can either help someone believe there is a path forward, or you can leave them feeling defeated. When someone is already struggling, taking away their hope can be just as damaging as the pain itself.
More recently, I had surgery to remove hardware from my ankle. They asked me if I wanted a fentanyl drip for pain management, and I immediately said no. My reaction was, “No, no, no, no, no. No thank you.” For me personally, that's a serious drug, and after my previous experience with fentanyl, I wasn't interested in going down that road again.
What I would have preferred is a conversation. Ask me what my pain level is. Ask what has worked for me in the past and what hasn't. Explain the options. Maybe start with less aggressive alternatives first. Talk about options like Tylenol, ibuprofen, or other non-addictive medications before immediately offering one of the strongest pain medications available. Give patients information and choices so they can be part of the decision-making process instead of assuming everyone wants the strongest drug right away.
I basically took matters into my own hands after my discharge and the disconnect with the referral system. I went home and started doing emotional frequency tapping for pain management. I used the Emotion Code to help clear trauma, working with the central meridian, along with meditation, breathing exercises, and self-hypnosis.
Another thing I’ve found that gives me a lot of relief is drumming on my spirit drum. It feels like it gives the pain somewhere to go when it’s stuck and throbbing in my body, and it helps release tension.
And I write. I do a lot of writing to help me move through the pain and process the trauma.
So I’ve taken a more holistic approach overall to support myself through both the physical pain and the emotional impact of everything I’ve been through.
If you’ve read this far, thank you for taking the time to hear my story.
If you feel moved to support my recovery and ongoing healing journey, I have a GoFundMe linked below. Any contribution, share, or support truly helps as I continue to navigate medical recovery, rehabilitation, and rebuilding my life after everything I’ve been through.
Your support doesn’t just help with practical needs—it helps me keep moving forward, stay independent, and continue healing both physically and emotionally.
pain management, patient advocacy, healthcare communication, trauma recovery, amputee survivor, chronic pain, holistic healing, medical trauma, limb loss, emotional healing
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