I thought I would be a cheerleader and coach my whole life... and I will, just not physically.
I had to adapt the mental aspects of cheerleading to living with Reflex Sympathetic Dystrophy (RSD), so I found a way to keep cheering despite my physical disabilities. I also had to deal with post-traumatic stress disorder (PTSD) caused by poor treatment from medical providers.
Most people think of PTSD as something people develop during service in the military or in other stressful jobs. But PTSD can come from other traumatic situations, including chronic illness.
According to McMaster University, up to 60% of patients discharged from an ICU will suffer from PTSD. Symptoms can appear months after being hospitalized and may include anxiety, trouble concentrating, recurring flashbacks and nightmares.
My long-term providers have been great, but if I didn’t learn to get my emotions under control (mostly sadness from what I had lost due to RSD), I would not have gotten the care that I needed. I had to have a plan, stay organized, and on-topic when I went to the doctor.
Those are some of the lessons I’ve learned that help me cope with PTSD. I also get psychological help when I need it, rather than avoid the emotional stress, anger, fear and anxiety. I am not perfect at this. but I do recognize that I have PTSD and knowing it is half the battle.
It is important when setting your expectations as a patient to know if your provider is willing to add new treatments and procedures to their practice, so they can grow with your needs. Many providers will only suggest a single treatment because they make a living on that one option.
If they don’t like an alternative treatment, you may hear them say things like, “There is not enough evidence for that” or “You’ll have to do this before we can do that.”
Don’t get mad if your provider doesn’t offer a specific treatment that you want. Find one who does. Creating a supportive medical care team takes time, respect and trust in all of your providers. It is up to the patient to make their team, be involved with their care, and find the right providers.
The healthcare system in the United States is primarily set up for acute care, so navigating your way through it can be a challenge when living with a chronic or rare condition. Americans are taught as children to trust and believe in the white coats. You break a bone, get a strep throat or need stitches, you go to the doctor, get treated and leave.
I had to learn that's not always true when it comes to chronic conditions. Some ER providers don’t know how to help a chronically ill person in an acute care situation. They’re taught to take care of mental health concerns first, then physical ones.
When I changed how I talked with providers and stayed on track for the reasons I was there, I got better treatment. It took me almost three years to figure that out, but it is always possible to learn the tools and grow.
Here are four tips about going to the ER if you have PTSD from poor medical treatment.
Another tool is to learn about PTSD, how to avoid it, and about being gaslighted for having a chronic illness. Gaslighting is when someone tries to manipulate you and make you doubt yourself in order to do something that they want. I have been successful at skipping the gaslighting over the years. I think others can too, if they have the right tools.
As a patient, you can take control. I approach my healthcare with the attitude that providers are tools for me and that I am responsible for my own care. Being in control can help prevent PTSD and a host of other problems.
Don’t get mad. Go to another provider until you find the care you need. Especially when you feel wronged or not heard.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.