A Pained Life: Can They Feel What We Feel?

By Carol Levy

How many times have I seen a post or comment in a chronic pain support group that read: “I wish the doctor (or my family, colleagues, friends) could go through this to really understand how I feel.”

I also wish they could, but is there any way such a thing could be accomplished?

Then I read about a course at a Japanese medical school, in which students pretended to be patients and were hospitalized for two days and one night. Students learned firsthand the stress, anxiety and loss of control that comes with being a hospital patient — like being poked and prodded, being told when to sleep, when it was time to get an x-ray, to have blood taken or bandages changed.

Students also observed “the distress of other inpatients” and the “psychological pressure” they felt from physicians. This was meant to enhance their empathy skills and to further their professional development.

It sounds like a good idea. But it's not reality.

Maybe in some form, the course replicates Philip Zimdardo's 1971 prison experiment, in which Stanford students were assigned to be prisoners or guards in a simulated prison. The study was meant to focus on the power of roles and rules, but was ended early because of the behavior that emerged in both groups.

Very quickly the students who were “guards” acted like guards by asserting their control and abusing their power. And many of the “prisoners” acted like prisoners, showing signs of distress from the powerlessness that comes from being ruled by guards

Our pain can also make us feel powerless, especially when it comes to treatment and getting the medications that we need. In that regard, we are indeed powerless. The doctors and pharmacists have all the power.

When we are hospitalized, it often intensifies that feeling of powerlessness. We are “imprisoned” in the hospital and not allowed to leave until someone in power gives us permission. We are in the hands of people who decide what we can do, where we can go, and if our cries of pain will be attended to or not.

They may be called doctors or nurses, but in a very true sense they are guards. Our freedom and health in are in their hands.

Is there really a way to replicate for others how we feel, what we go through?

In a promo for the new TV series “Brilliant Minds,” Dr. Wolf, the main character, says he wants to know what his patients are feeling, so he can feel it himself.

My first thought was that would be great if it was doable. But then I thought about it more deeply. There is no way it could work. A doctor can go into the hospital as a pretend patient, even allow himself to have medically induced pain, but they will always know it is just an experiment. Their pain will end, they can go home when they want, and they will feel fine.

It would make life so much easier for us if others could feel our pain. Absent compassion and empathy, I don't see how it is possible.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

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.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.