This is a very difficult topic to discuss! This issue often involves a loving, well-meaning friend or relative as the cause of unintentional pain and sometimes long-time suffering. It is experienced by those with conditions producing chronic pain. Over the past decade, I have repeatedly been physically hurt by kind, caring people. So, I truly hope this article will serve to raise the awareness of both the general public and more importantly those individuals who interact with those suffering from chronic conditions on a regular basis.
I can personally attest to having experienced numerous physical setbacks as a result of the damage done by those well-meaning individuals. The emotional toll can be overwhelming as such setbacks, while unintentional, are unnecessary. The chronic pain patient experiences additional pain that can cause tremendous psychological damage. It is incumbent upon all of us to attempt to develop an understanding of the impact of our actions relative to how we interact with individuals suffering from chronic pain and other unique medical conditions. Please, take time to get educated on how not to hurt someone else by mistake, through your lack of understanding.
There are so many conditions one might be experiencing that, in many cases, are invisible to the naked eye. I happened to live with Ehlers-Danlos Syndrome, a condition which results in the bodies inability to produce healthy collagen, the glue that holds your body together. Without healthy collagen, tendons and ligaments cannot do their job. Instead of holding the joints in place, they stretch and can cause the intense and often chronic pain. A simple hug allows movement of the skeletal frame so bones shift causing subluxations or even dislocations. I know that sounds hard to believe but it is real and can be extremely painful. Someone living with CRPS, (Complex Regional Pain Syndrome), experiences burning pain that another can’t see. A simple brush against their skin creates excruciating pain that can last for a long time. If one is recuperating from a sprain or break a simple pat on the area intended as a kind gesture can cause, pain and in some cases actual further damage. People are experiencing pain from sickle cell disease, migraines, shingles, frozen shoulder, bones fractures, slipped disc, kidney stones, trauma, spinal headaches, fibromyalgia, arthritis, gout, sciatica, endometriosis, stomach ulcers, trigeminal neuralgia, appendicitis, cluster headaches, peptic ulcers, acute pancreatitis, to post-surgical pain, to name a few, many around you are dealing with pain and need you to be careful touching them! Nobody has asked for these conditions to cope with but although your damage is not intentional but is also very avoidable.
After now twenty-four surgeries, I must deal with a more sedate and predictable lifestyle. I was a teacher and my life was marked by intense social interaction, which I loved and thrived upon. But I have now become cautious and at times, fearful of what was once the source of such joy and meaning. Social interaction, which so often leads to healthy normal physical interaction, has so often led to injury and pain with the need for weeks of healing and recovery. I am often deprived of the healthy rewarding activities I had resumed even if in a limited fashion. What is simple for you, becomes weeks of healing for me. Let me give you an example:
- Recently, after addressing a group at an event, sharing the number of surgeries I had experienced, including fusions of the neck, a women in the audience came over to wish me well by reaching out to my neck to pull me towards her. That caused the shoulder to sublux, trachea shift, ribs sublux and oxygen levels to decrease. Despite numerous PT appointments since, to reposition the bones correctly, the trauma lasts due to the swelling that occurs, so I will be working on calming the body back down for weeks to come.
That is just one example of what can happen when you don’t think about touching another. The list of conditions that cause medical issues are too long to post, but the choices you can make to not cause another person damage are there for you to make:
For the Healthy toucher
- First and foremost, do not ever feel awkward or uncomfortable inquiring of those suffering from chronic conditions as to the least harmful method to approach them and interact with them. You do not want to hurt them and no patient desires more pain and disruption in their lives.
- Think first and take caution before touching
- Consider asking, “Is it safe to touch you?
- Consider other ways to express admiration, love or a simple hello besides touching - a smile, a conversation, a kind word or gesture
For the Person that can get damaged
- Consider sharing some type medical alert when in a gathering - possibly by wearing even unnecessary brace for alert or even a mask
None wants to touch someone with a mask on assuming they are contagious.
- Consider doing what is done before communion when not wanting to participate - putting your arms crossed on your chest
- Consider pre-warning friends of the issue of being touched before a gathering
- Ask close friends and relatives to attempt to create a safety net by intervening in interactive social settings as a protective barrier, warning the well-intended not to act in a manner which could intentionally injure you.
I wish I had all the answers to prevent the damage that keeps happening to me and others, by people who are trying to express kindness towards us. If you happen to have other suggestions we can share, please consider posting them at the end of this article. We need to help educate others how damaging and long lasting a simple act of touching can be to one that is coping with a painful medical condition.
May Life Be Kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!
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 National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/