Stop Hurting Others

Stop Hurting Others

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.

Ellen Lenox Smith

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/

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ellen Lenox Smith

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/

newest oldest
Notify of

This is a very interesting subject to me, both because I have debilitating chronic pain and because I have obsessive-compulsive disorder. One of the tics of the latter is a fear of being touched. I not only sympathize with your need to be able to control touch from strangers, I also encounter the problem of balancing the need to receive treatment for my pain with the intense fear of being touched in the course of those treatments. It can complicate or even eliminate a number of treatments that could, potentially be helpful like massage, cranial-facial manipulation, even acupuncture. Massage, for example, seems like something that might help my degenerative disk disease-related muscle spasms. Unfortunately, when I was pushed to try this, each time I left not only psychologically shaken, but physically a wreck with muscles that were twice as tight as they were upon my arrival.

It goes further than these obvious examples, though. I’ve also learned that it’s important to mention right away, when meeting with a new doctor or physical therapist, that they need to be absolutely certain to warn me before they touch me, and that I’d appreciate their help in limiting touch to the minimum necessary. Yes, it occasionally makes a doctor or therapist look at me like I’m nuts, but usually they are immediately accommodating and, if they aren’t, then I know they probably aren’t the right match for me.

There are a lot of reasons why something very simple, like a touch on the arm or a pat on the back, can cause a complex reaction. Thanks for addressing this topic.

Susan March

I’ve had chronic pain for over 30 years and my disabilities are invisible. I always ask my niece if I can give her a hug and the same applies to people who want to hug you. People need to ask before they hug. Where are the boundaries? People think it’s ok to hug and sometimes it is and sometimes it’s not. Be assertive and let people know you want an air hug. One way to take care of yourself is to set boundaries and let people know what is acceptable to you.

Greetings! I too have trouble with being hurt unintentionally by well meaning family and friends. The hardest part is to keep people at bay who want to give me a big hug. If someone hugs me too hard I simply faint and go straight down to the floor. Not so much now that I use an electric wheelchair which gives me a bit more time before they can swoop in for the hug. I try to put my hands up and say “just send energy, no hugs please” but even that does not stop everyone. My hardest time was after having a bad attack in a movie (even though I wear sunglasses and noise canceling headphones there was an unexpected explosion) I was rushed to the nearest ER and the doctor repeatedly lifted my arm up into the air and let it fall. Over and over again, to prove I was not unconscious. If they had let any family members in they would have known I have dystonia as part of my Atypical Parkinson’s. I have a damaged ligament now and all the treatments, P.T., massage, acupuncture, cupping, TENS, arnica oil, CBD oil, and other things have not helped. I will not have another surgery so I think about that one bad doctor lacking everytime I have to stop and rest my shoulder.

Deb

My little nephew has a disease that causes his bones to be brittle and break with virtually the touch of a feather and people try to hug him because he is a kid so his parents just did a very good job of educating those around him! I love the idea of the t shirt saying Fragile! Your hugs HURT! I have fibromyalgia and a rare autoimmune disease and when it first started to develop my little one would crawl onto my legs and cause me such pain I couldn’t handle it and the ignorant doctor said that babies crawling on their mommy’s legs hurting wasn’t unusual! I found a new doctor! But it shows that even doctors can’t understand painful conditions! I agree that the new rules regarding opioids is absurd and the more chronic pain patients speak up for themselves the sooner these absurd rules will change, however I’m afraid that until we have a different president and the administration in the CDC, FDA and DEA change we will have little progress! I’m afraid that with people who have the attitude and lack of concern about those who are not wealthy and are looked upon as a burden to society we won’t have much concern for our quality of life. As long as people like Jeff Sessions are of the mindset that we can just take an aspirin and learn to live in pain there’s no hope! So I encourage you to vote for someone who has a lot more compassion for more people than those who are his friends!

J. Hemingway

I have been a chronic pain patient for some time now and never have abused due to the over reaction and stringent policies put into place quality of life now is zilch I have ordered a DNR necklace and have papers posted I don’t desire to continue living in pain and then treated like a criminal if I say anything Doctor to busy protecting his own [edit] now to concern himself with patients someone please let doctors go back treating us right stop the punishment it’s cruel and abusive

What a terrible thing to happen to you that added additional suffering . I think I would just add that into my speech about please do not hug me or have some type of backdrop that says hugs cause pain. I can’t believe these people were so stupid that they didn’t get the gist of your story . I completely understand that hug situation. I cannot be hugged. A very sweet Old Gentleman at church was so friendly & always wanted to give me a hug. I just dreaded it. After two hugs I finally said to him before the third time he tried to hug me & said I’m sorry I love you for you to hug me but I have this painful condition that I did not tell you about & it’s very painful for me to be hugged. He seemed puzzled but then the next time he did not hug me ,he just smiled & handed me a piece of candy. My comfort is more important than a person feeling rejected. What aggravates me is when people that are old enough to be your grandparents put guilt trips on to participate in church activities or when they find out that I stay at home , want me to come by check on them. We aren’t related & some get around better than I do. I don’t ask them to check on me. Or my close friend use me to take her hospital for surgery/test but my turn comes she always has other plans.

Annell

I had a friend who told me several months ago not to worry about going to Drs as she found out I had to cancel appts because didn’t think I could drive myself. She was so nice we would give each other cards and things. I went online and bought her and hubby around 150-200 of various things 1 was a princess crown for her. She was just so nice always stopped at Denny’s she loved pan cakes well I can have no gluten and don’t like eggs and they don’t like my tummy but I neve told her but she would never let me pay. I’m on SSD her hubby told me they r doing the best they ever had. I needed car work he said he would pay I called it was 550.00 I gave my debit card card over phn him and son picked it up for me upset that I had paid. Well about month after that when she stopped by to get bag of items I bought, which really couldn’t afford she look me in my eyes and said I hope u know we didn’t take u to raise!! And left. Found out friend died and she talked to 4 people about what she has done for me. Boy did that hurt! When his mother was passing away few months before I was there with food for them and to be with them, they told me I was the only one who did. She has new, old, friend who can go and do. It shocked me I had no idea that was coming. Stayed at her house 4 days to take care of 3 dogs 5 cats and 3 Billy goats didn’t say how bad I was feeling didn’t want to hurt feelings especially since they were so nice to me. Maybe too much info oh I have to say this saw where she banged up her bumper I was on other side of car and she told me,annell, that she would just blame it on annell!! Thx having bad day thx for letting me vent and best to all of u. Oh same week my place sold and raised rent 225.00!! If I found place don’t know how I would be able to move I can’t cook how can I pack?? Low-income housing 2 yr wait list!! Oh oh just too much to share thought about deleting but put too much work in this sorry pep

Todd

Ive been reading on here about what others are going through and it helps me get through the day cause I’m not alone.

I want to share my story. I will try and keep it short. I was born in the 70’s and I had gotten really sick. Well come to find out I am one of 3 % of infants that survived due to having meningitis. I can’t tell you how many surgeries I had then. But it caused me to be legally retarded. And it’s hard for me to explain to dr’s what’s going on. So I had 2 spinal fusions at 30 yrs old. And my dr said my back is the age of a 90 yr old . Well in 2009 I had a hip replacement. Well 3 weeks later it dislocated 4 times in 4 days from then to now I had my other hip replaced. From then to 2018 I’ve had 69 hip surgeries . My surgery in March of last yr went way bad. I dislocated 14 plus times in two weeks in April. Maybe 25 times in May and from then on wilmed and Duke sent me home with a dislocated hip and I had to take care of myself for 6 weeks until I went out of state an come to find out. Duke put my hip in retroverted. They blamed it on me. Said I did it on purpose. I was on a long acting pain med and short acting. Well my new dr gave me this on called Xtampza. And that didn’t even stop my neuropathy in my foot much less my hips and back. It did give me a headache and made me more nauseous than I already was. For something they claim works. They are lying. The test they do on people. I’m sure they don’t know what pain is. I hope that the ones who are against pain meds. That somethings happen to them and they suffer like we do. If you think for a second that people are dying from just pain meds is a bunch of bull. I know for a fact you can’t. They are on something else as well and mixing it.

Bless your heart Ellen. I agree with Valerie, perhaps if you had some nice tops made with thoughtful logos it might help the situation. Oh I don’t know, perhaps something that says,

STOP!💘
IF you ❤ me,
You WON’T hug me…
IT HURTS 😢 if you do!
(inquire within)

I know if I saw someone wearing a shirt like this I would think that there was truly an issue with pain involved, not someone wearing a top to offend the people who read it.
It’s just a thought. In the meantime may God continue to bless you and send the miracles you so desperately need!💝

Kris Aaron

Thank you for writing this — it’s a seldom-mentioned topic that needs to be discussed!
I’ve always hated being hugged, unless it’s a hug from the few people I’m truly close to. Women, especially, are taught to be sensitive to the feelings of others, and many of us would rather hurt ourselves than anyone else.
Unfortunately, it’s an attitude those of us in chronic pain need to overcome. We absolutely MUST force ourselves to speak up — firmly, if necessary — and insist that we not be physically touched. Some relatives may object and head in for a hug, anyway. “Oh, honey, Aunt Peony is jus’ so glad to see you. Baby, I jus’ gotta give you a big HUG!!” and Aunt Peony grabs you in a judo hold.
It’s a matter of deciding which you’d rather live with: Aunt Peony’s hurt feelings (okay, she’s always been a drama queen) or chronic pain in the 7 – 8 range when you’re normally a 5 – 6. Peony will recover but the pain will go on for the next few months.
One trick I use is to be ready with a pained yelp the second I feel those arms go around me. Make it loud enough, pitch it high enough, and the person will instantly jump back and let you go. Everyone else will look at them as the source of your pain; you’ll feel quite justified in your reaction, even though Peony hadn’t yet put you in her full headlock.
Even at our most ill, we try to take care of the people we love. But we can’t do that if we don’t take care of ourselves first.

Karen Thompson

We EDSer “Zebras,” as we call ourselves, often end our e-mails by stating “gentle hugs.” It’s also how we accept those hugs, GENTLY, as is so necessary for us.

Karen Thompson

Often just saying “I will take a very “gentle hug,” because I am in a sensitive state of being right now,” will suffice.

My pain management doctors are sooo legalistic afraid for themselves dont really care about patient I left I got caught trying manage my pain myself cause they want doing their job

Valarie

Wear a shirt for such occasions have it monogrammed on the front and back. Warning! Don’t touch (me)! Ask for info.
Or similar.
God bless you. What a horrible disease.

Alex

Ellen, thank you sooooo much for writing this! I have full body CRPS and believe me I get it. I finally left my family home that I help to build after over 20 years fighting this disease. My reason for leaving? Too much unintentionally caused pain. A daily occurrence which cost me hours and often time days of pain. Family refusing to accept the level of pain I was in and just believing that I was just grand standing or exagerating my symptoms. All the while they are inflicting pain they are telling me what a good sport I am for how I dealt with my pain. A total dichotomy I know…hurting you everyday and congratulating you on how you deal with the pain. I have been out now for 2 months, my daily pain level has dropped substantially and distance is good for the relationships.
Please people, stop hurting those you care for. Pay attention, learn about what they have and how your inadvertent touches or hugs can negatively affect them.
Thanks again Ellen!