Social Media and Chronic Pain: The Good, The Bad, and The Ugly

Social Media and Chronic Pain: The Good, The Bad, and The Ugly

When I was first diagnosed with Fibromyalgia in December 2009, I really didn’t know all that much about it. I had been in some degree of pain for many years, just not anything like this.

Being the research junkie that I am, I turned to the Internet to learn more about my newest challenge.

I was relatively new to Facebook at the time, but I did have one friend who had fibromyalgia and she pointed me in the direction of a support group.

I have never really minced words. I have probably occasionally overshared more than others. I always took the view of “this is who I am, either you like it or you don’t need to be a part of my life.” I found that more of my old friends stayed rather than left.

Of course, there were a few who automatically assumed I was a drug addict just because I was on pain medication.

You’ve met the type. They’re the ones who always say “if you just throw away your pills and go to the gym, your pain will go away and you will be just fine.”

Denise Hedley

I’ll get right on that.

No amount of reasoning will change their minds.

Believe me, I tried. I told my side. Some listened and stuck around.

Those who were completely convinced they were right were the first to be blocked.

Don’t need them and don’t miss them.

But that was 10 years ago and every single one of them is still out of my life. Realistically I discovered more supportive people than these set-in-their-ways judgmentally stubborn idiots.

Their loss. I’m awesome!

I then decided that I needed to connect with others suffering from my same degree of pain. I needed to immerse myself in the environment of others who actually understood what I was going through. I tentatively joined a couple of groups.

I should have just lurked first instead of just jumping right in.

I might have even been considered to be a bit naïve at that point. I figured that in a support group with other chronic pain people that I could really vent. That people would understand. I quickly learned a few things…

The larger groups usually have a few things in common:

  • There are the cliques who are set in their ways and don’t like big mouthed newbies who come in and want to do more than look at pretty memes about being strong and in pain. You know, the ones like me who have something to say.
  • Usually rules outlawing swear words within the comments. I think I was thrown out of one group for that one a day.
  • The surprising one was a large number of fakers. They claimed to have our symptoms. They claimed to share our diseases and conditions. They had a condition alright, a mental one.

I became wary when I realized that being the new kid in an established group isn’t always a good thing. I was made aware of backstabbers – in our own community – who decided that I wasn’t who I seemed. I must be on other kinds of drugs.

Just for being me. Just for needing to be heard

Suddenly, this backstabbing disease spread to online friends who I had known for years. It got ugly.

I unfriended 137 people in one day. The kind who say “you say that if I spent a day in your shoes, I wouldn’t make it. I would find a way. Stop whining”

All because I posted a meme for fibromyalgia awareness day. Seriously.

I had known some for several years.

About a dozen came back later. I had been wrong. They are valued friends now.

Learning in my Fifties that life is still like Junior High.

And every single person doing the bullying did it for their own purposes. Just to have something to talk about.

But something amazing happened too. I found support where I didn’t see it coming. First one reached out from a smaller group. Then another.

There were tentative Skype calls.

Messages.

Phone calls.

My tribe had found me. They have become the people who I will fight for forever more.

Closer than sisters. On the other side of the country, but one of the few. One of the good ones.

Bottom line: there is good to be found on Social Media. There are some fantastic support groups there.

It feels good to talk to those who can hurt with us. Who when we are having a really high pain day don’t brush us off.

We still need to be heard publicly, but at the same time, maybe what we need is to work more on bringing the quiet ones to the forefront. Give them their voices too.

Maybe we need to grow our tribe before we can truly be heard.

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Wendy

Good post. Have not joined any groups nor typically respond, but I liked what she said.

Cindy

Deni H.
I’m very interested in being in a group and or helping. Can we chat at some point?

Martha – I have been tested and retested and there are no signs of Lyme Disease or any other tick-borne infections. I wish it was that simple.

Darlene – I’m participating in every way I can think of, and I am not only seeking membership in existing activist groups, I’m contemplating starting my own in conjunction with a couple well-established groups. I also do what I can with US Pain Foundation and am always on the lookout for new opportunities.

Tom – Great group! I’m definitely impressed, and appreciate the addition.

To all: Working on some new ideas on Social Media by joining forces with a couple established groups that are doing good things. I will post the new group once we are up and running.

DonnaC

Hi Denise,
You touch on some very important behavior issues when involving many groups. We (the admins ans I) have all been through what you have and I’ve left several “support groups” because of this bahavior.
Running two very large support groups, two Awareness pages, helping patients, advocating for our rights to proper pain management is such a huge problem for all CPP, especially those of us who suffer from multiple disorders like many others do including myself, it is hard for family, friends, or even physicians to understand our pain, or limitations.
I also learned that not everyone has become an advocate for the right reasons. I know first hand how bad backstabbing, bullying, and minipulation can be. I’ve seen some CPP go as far as to sabatoge others when trying to promote awareness! It’s like some are trying to make a name for themselves? Some act like it’s high school all over again, and only the “cool kids” can join in, and promoting awareness is like a competition to alot of them. This hurts not only the movement in promoting awareness, but also CPP who truly need help.

Being an advocate is so very rewarding. I’ve met some of the strongest people through these support group, and many took me “under their wings”, and taught me so many things. But above all they showed me compassion, and love. That’s what being an advocate/ group leader is all about. It’s the chance to help someone else because you know what it feels like to be left with nothing. No clue to your disease, no support, and no answers.

I’m truly sorry you went through this with other groups. I’m so glad you’ve found a good support group and have a great support system. This is so important when living with rare, debilitating pain. Sending you lots of hugs. Thanks for touching on this subject. Xx

Cindy – I would be happy to share, but more privately as to why 137 in one day. It wasn’t my best day. Please email me and I will tell you all about it.

Virginia – I had to reread your comments.

Go ahead and email me. Make sure you make the subject matter stand out. I’m happy to respond. Hedleywriter@gmail.com

Thank you all for your kind words.

The meme that I posted that day said very simply “Educate yourselves. National FIbromyalgia Awareness Day. It’s not all in our heads.”

If anyone does want to reach out, please feel free…I don’t blog as much as I should, but I will be starting to again within the next day or so and hope to keep it more regular.

Livinglifewithfibromyalgiatoday.wordpress.com

Yes, I do consider myself an activist who is looking for the right outlet. In the meantime, if my words help, amuse, whatever, that makes me happy. Writing is my distraction. It is a gift that I was never confident enough to use before. Obviously, that feeling passed…LOL

In our situations, it is either laugh or cry. For the most part, I choose to laugh, I’m sure sometimes maniacally.

I wish you all well. Low pain days and positive support.

D

Angie H

Nicely written and unfortunately very accurate. I actually pulled myself out of alot of groups because of the double standard and to much negativity. With the supposed “opioid crisis” I couldn’t take the constant this one passed away and I stopped getting on because it was making me worse.
I do have a question for you. You said you have fibromyalgia and recently diagnosed with CRPS/RSD, by any chance have you been tested for a connective tissue disorder? Unfortunately they seem to miss the main problem or dont connect the dots, so to speak.

I wonder how many women that have fibromyalgia when they have a new symptom it’s automatically labeled by a physician “it’s your fibromyalgia.” Instead of doing any test, the label fibromyalgia gets attached. I went through this when I had blood clots in my leg & both my legs were swollen. I seen six doctors some of them twice & 3 out of the 6 said it was fibromyalgia. Swelling is not a symptom of fibromyalgia. Now I’m facing a complication from Fai / labral tear surgery. so far it’s been labeled by the surgeon, by the PCP and by the surgeon who sent me to the surgeon as fibromyalgia when it didn’t exist before the surgery but only after the surgery. I’m already healed up but a new pain continues. Why do doctors label everything is fibromyalgia yet not willing to do any tests to find out anything different? It’s like you have to continually fight to get medical care & you just go in circles & waste money, time & I have a new pain caused by surgery that’s added on top of already all the other pain I deal with but this one is making me suffer even more. I think these are very educated people why are they just labeling me. I wish I never heard the word or was labeled with fibromyalgia bc just seems to be the go-to word for Physicians. I tell them that’s not it, let’s move on to finding out what the real problem is. I am still in limbo waiting for help.

Suzi

I agree with you. It’s all or none with me. Pain Management has been weeding people out whom are saying that they have a 10 out of 10 pain for years. When I had my first 10 pain I screamed and acted psychotic! Begging my MPOA to use the chainsaw and cut off my limbs. I’m an disabled nurse, damn good one at that. But I became resentful and almost jealous of people who were in less pain. I became judgemental, I am a God fan, and I know God doesn’t like ugly. This world is a challenge for the sick and dying. And to think I was a Human Rights Act. I still am! My MPOA reminded me of the challenge to be a voice for those who don’t have one without judgement. So I did. There is no medical reason I should be alive, and I have to laugh, it’s not me who is all powerful, how awesome is God?!!! He gave me a voice and the knowledge, and the he nudges me to learn about others battles. I can be of service to you anyone who is reading this. We are HUMAN. Doctors whom are sacrificing patients, DO NO HARM, Dr.s whom are trying to help, don’t try DO HELP. No one isalone here. I need your prayers and support too. Thank you for listening

darlene craven

Are you a member of any activists groups hoping to advance awareness and hope to increase access to pain treatment. We are not addicts and our drs are not criminal. I have spinal diease

To.Denise Hedley
I’ve been sick since 1988, tested positive for Lyme in 1991, given doxy then dismissed. With my experience and research, it is my opinion that you too have tick borne infections. Do the research

Rose

I have had arthritis since I was seventeen, and lived in some degrees of pain all of my adult life. The diagnosis of fibromyalgia was actually something of a relief as the doctors who had always treated me like a ‘drug-seeker’ finally began managing my pain. When my symptoms first became really difficult to manage and I could no longer work, I knew I would have to sell my house and get something cheaper. In the interum I asked friends to loan me money (something I swore I would NEVER do!) The sweetest of them bailed me out to the tune of $28,000! Some friends! Others suggested things like, ‘Why not drive a school bus?” Like anyone would hire me to drive their kids when a drug test showed positive for opiates. Invisible illnesses bring out invisible mean-ness in some people. I did sell my house, I paid my friends back, and I know who loves me and who isn’t sure.

Kristen

Thank you Denise! Great post.I can relate so much to Connie and Billie.I do not have FB but in the past I have found many were not very welcoming to the new people.In fact I felt like I didn’t belong at all.I to am one who is more the listener than speaker.I too don’t understand how some ,not all can be so cruel when we all are dealing with our pain.I would like to think more would have some empathy and understanding.In fact just today because my pain level is unbearable even with my Med that I decided to look at live Web Cams of some Owls to try and distract my mind alittle.Under the Video people Chat and I happened to glance at some to get updates and one lady had posted she wishes there wasn’t so many changes, such as new people joining in the chat and that mybe meaning her older chat buddies could find another peaceful place! What!? I felt like responding saying that the webcams are made for anyone and everyone who wants to watch the Owls and join in on the Chat.After all that site was not put there for her alone.Geez I refrained from posting but I do often wonder if some sites do more harm than good.I do like and appreciate the NPR because I feel like everyone on here understands each other and aren’t critical.Bad enough we have to deal with our Drs who can be cruel and Friends and Family who disappear because they think going to the Gym,Eating Healthy and Drinking lots of Water is the cure for all which is exactly why I have no Friends anymore.Sorry this is so long I hardly ever post but I do read daily.

Cindy

Author – I’d like to see that meme that you posted that caused such a huge problem. Like most or maybe all of us with chronic pain, I’ve lost friends. I even lost a close cousin. She had a horrid childhood, and tons of medical problems, including very severe colitis. And, a life full of tragedy. Luckily, at least she found the man of her dreams in her 40’s.

My disabling pain resulted suddenly from a surgery, although before that I already had fibro and many other problems. My cousin and I were very close for many years, but a few months after my pain began , she basically told me I should just pick myself up by my bootstraps, and I explained that I couldn’t, and I dont’ think we ever spoke again. Annual birthday cards. Big whoop.
I understand how incredibly hard her life has been. I admire her fortitude.

But mine is gone. And it’s not possible to compare what any 2 people go thru w/o literally transferring our pain into the other person, which unfortunately can’t be done.

Back to you author. I agree with a lot of what you wrote, but I’d like to see the meme and know more about what caused you to unfriend 137 people in one day.

I need to know the other side of the story.

So, author, please give us more info.

T. Negrete

I am very appreciative of those who can find their words to share. I’m
not as educated or am I eloquen, so when others share I soak in what has been written. Thank you so much! 💖💖💖 I do wonder if there is a group I can fit in, I haven’t found one yet. I won’t go into my ailments, I am in Pain constantly and am tired of judgement! I do have an end of life plan for when I can endure no more!

Mark Ibsen MD

Look for the rainbow. Good points you make.

https://www.facebook.com/markmusheribsen/videos/10218941936954798/

Maureen M.

Denise, Another well written and said post! It took me years of searching for support in many ways before I came to realize that its is rare to find. And, by now, I’ve learned to keep a lot to myself. I just can’t deal with anymore emotional let downs on top of my physical issues.

Alesia

Morning, I skip saying Good morning to everyone except my children. They worry when I leave out ‘good’.
I was diagnosed with fibromyalgia in 2008. Prior to that I was given one med after the other for depression. I have herniated and bulging discs and nerve root damage. Pain has been a constant in my life for 30 years. I was given mild pain relievers up until my fibro diagnosis. Finally, a better class of meds to get some RELIEF! That is until my husband passed away and I had to move in with my son’s family 5 states away from my home of 50 years. With help I found a doctor who generally understands fibro. But, a loss of my breakthrough pain med has made it one difficult year. I try to explain how my body is having a much harder time than my emotions adjusting to my loss. I have a 2 yr old to play with now. No longer am I the sole caretaker of a severely disabled veteran. He is pain free now, God rest his soul! Oh, I miss him! I began to miss him as his decline became rapid several years ago! My physical pain has increased greatly. I actually NEED my opioid med. I carefully put it into proper containers. I cannot afford to take more than prescribed out of genuine fear of not having some semblance of relief for one day or night! I don’t get how folks can get hold of loads of opioid pills to abuse. I can’t! I’ve had to sign a document stating I am an opioid user, who prescribes it to me, and where i buy it from. With such oversight, how do abusers get their ‘fix’ needs met? A breakdown somewhere down the line of, uh-oh, fibro fog has set in. This is as bad as the pain. When I can’t think past my ass, as the saying goes. I feel like all my years of schooling goes out the window, etc.
All of this is to relate that I understand. I read what others have to say in groups while keeping my thoughts to myself on most occasions! Reality is hard enough without getting jabbed by others due to their perception of our disease. My best to all who suffer through.

Gail Honadle

30+ yr FMS, I’ve heard it all, it’s in your head, it’s a syndrome, Carpel Tunnel like but no it’s not Carpel Tunnel, no it’s a disease. I don’t know. It’s not fixable, or treatable. Add in other health issues and some times it’s hard to separate the two or four. Woke up one morning unable to lift my arm, turns out to be a to small to repair Rotator Cuff tear. Joints hurt, muscles hurt, well your over 50, you have Osteoarthritis, Osteoporosis, here’s a pill, and another, and another pretty soon your GI Tract is Ruined. Then comes the Vertigo attack at the wrong age, we don’t know what to do with you, turns out it’s Meniere’s. And you react to the drug for it. 1 thing you learn fast is most auto-immune’s are drug and chemical sensitive. The supposed experts are more baffled than the patients.

We’ve spent hundreds of hours researching on the internet. I started with books from the Library as there was no Internet back then. Closest I could get was Myofascial Syndrome for a explanation. Why am I getting all these bruises, why do these spots which turn out to be the ‘Trigger Points’ hurt like a bad bruise but no bruise. Doctor after doctor has no idea what it is or how to treat it.

Since the Gastro Tract in now shot, a special diet has to be followed, guess what it will cause Type 2 Diabetes. Adding another Auto-Immune as you already have Hypothyroidism, which is typical for a FMS patient. Why are 80% women and only 20% men? It’s hormone tied we think. Well Hormones begin to change at Puberty, Pregnancy, Perimenopause, gets worse with full Menopause. And NO LYRICA or NEURONTIN won’t work, they are A Fib trips to the ER. Only thing that seems to help is Valium at 20 mg a day, 10 AM/PM. Still not enough, but all FDA allows. Which should be a individual need, not a average. Not all of us have breathing issues because of it.

Connie

You stated that perfectly! Sharing “alternative” treatments that have worked for you is great but they don’t work for everyone and it has really hurt and made me angry when even other cpp decide for me that “opiates are bad and unnecessary to treat pain”! I get enough of that from doctors and people who don’t know what REAL pain is! Sadly I’ve been on several support groups for years looking for those potential understanding friends to no avail! I can try to put a good face on for the general public but sometimes I need a FRIEND who understands to vent to!!

Billie

Thank You for your post. I HAVE tried in the past to join groups but have givin up. I don’t understand why we are pushed out when we all are in the same boat.I am a listener more than a speaker and like to ask question so I can understand from others perspective. The last time I belonged to a group was 9 years ago.
Don’t want to go through disappointment again. I would not know where to begin.
What are the do’s and dont’s of a group?
Does a group really help?
Thank u for your time

Phyllis Bobay

Healingbreastimplantillness.com, This web site tough me so much about the pain that I have been in since 1993. I had my first set of breast implants placed in 1991. Mentor smooth saline. 11 years later while having a mammogram one ruptured. I went to a plastic surgeon and was told that both had to be replaced. In 2002 I had Mentor textured saline implants placed. I have been getting sicker and sicker over the years. I was diagnosed with fibromyalgia, bladder carcinoma, depression, anxiety, headaches, sinus allergies. But every test that I have done comes back normal. I research breast implant Illness, I had most of the symptoms. I contacted one of the few plastic surgeons who specializes in doing explant surgeries. Enbloc, I will be removing my implants so that I can regain my health.

Barbara Snow

My dear Denise, I hear you. I talk to know one about what I have been going through for many years now. When I first went on pain meds, everyone in my family, and there are few. I only have a daughter,a son, granddaughters, and great grands. My niece is the only one that listens. My son works for PROP. So he is my, our enemy. Nobody should have pain pills. Not one of my old girlfriends will talk to me about it. So I just don’t being it up. I love alone in my head while taking care of my dying father-in-law a long way from home with no help. Things that run through my head are not pretty. I am so pleased you have found your place. May that peace stay with you. A sister, Barbi.

Thanks for sharing your social media experience Denise. I am glad you find the online support groups helpful.

Like you, I also have Fibromyalgia and experience with pain-related Facebook groups. But I didn’t like hearing people complain about their pain because it made me focus on my own pain.

The “whining” goes against what I learned at the Mayo Pain Rehabilitation.Center. At Mayo I learned complaining about pain can fuel anxiety and intensify the pain.

While I still follow many of the groups to share insights an support, I started my own Facebook group, Chronic Pain Champions – No Whining Allowed
(https://www.facebook.com/groups/painchampions) to provide a “positive” resource for people with non-cancer/end-of-life chronic pain, caretakers (family and friends), medical professionals and industry experts to champion pain. No complaining, woe is me or negative talk is allowed.

Check out my group. I hope you find it to be a good resource in your battle with pain. Best wishes.

Virginia

I’m one of those quiet ones you speak of, Denise. I don’t do social media, have most of the same physical issues you suffer, but need helping hand to discover a way to maybe connect to the proper people with no social media? I’ve tried to connect with you thru the URL under your article title, and I will try your name next. Right now the symptoms from fibromyalgia are really starting to kick me in the a__. I’m a research fanatic as you are, and probably more so, and mostly on medications, their affects, and actions upon the body, and side effects. Been a caregiver over 20yrs, but now having to rest, which has been almost more challenging than the difficulties and pain from fibro, osteo, DDD, carpal tunnel, occipital nerve disease, spondylosis, and many other issues, which are a result thereof. First time I’ve disclosed this on air. God bless you and if there’s a way to connect with you, and this blog allows one to connect two people, maybe you would help me? My threshold for pain is low, yet tolerance for pain is higher than many, and I’ve been as you, touted as looking like I’m not in pain at all when I’m actually well past a10. Thank you for this message. It’s encouraged me to look for support from others in my position. I have just shied away from social media due to several unfortunate incidents in the past. Thank you Denise, and thank you, NPR.

I agree completely. While I have been in, and moderating, a now silent email support group since 1998, there are still those groups today. The ones who come up with a new problem when you find a fix to the one that was vexing them.

The backstabbers who make their own little groups just to make fun of other disabled people.

The ones who cause drama, not only for the group, but for a seeming need to have drama. Constantly.

There are good groups out there. I usually lurk a bit to get the feel of things within that group. Some are just memes. Some do news in the pain community. Some, yes there are some, who give and keep on giving. I’ve found that being a voice, albeit a quiet one unless you cross me, being that person who understands what soul-crushing pain is when few others do, starting my own tribe if needed – this is how I’ve found the most value over my 21 (yikes) disabled years.

I may not just have fibro (had it my whole 45 ¾ years), but I am knowledgeable and I try above all to teach. It’s the only way they will ever learn.

Thank you 4 bringing such a critical scenario to light those of us with invisible dseases have a hard time getting people to understand and empathize where we are coming from. It is truly sad that some of us have to convince long time friends or even some family members that we are truly sick if we have to do that those people truly need to learn the meaning of true love whether it is a friend or family member…living in chronic 24/7 pain it’s a tough job and even though putting on makeup and having our hair done once in awhile to feel quote on quote normal we still suffer silently. My father always taught me to treat people the way I would want to be treated and I hope and pray that someday those people that have turned their backs on me when I have tried for years to convince them that my diagnosis of Interstitial cystitis and Tarlov cyst disease of the spine cause me debilitating life changing pain that one day they will quit telling me to learn to live with it and instead put their arms around me and give me a hug instead of trying to convince me that I have to learn to acept it… I learned to accept it almost 30 years ago when I was diagnosed with my painful bladder syndrome that causes 24/7 Around the Clock burning pain so news flash I have learned to live with it… I wonder sometimes if they would be able to? all of those people that make their smart-aleck remarks sometimes it makes me wonder how long they could go living in 24/7 pain without prescription pain medications? Since we have been removed from those medications now my life has deteriorated in the last year-and-a-half and even though those pitch black circles around my eyes show on my face the pain and Agony I’m in it is still amazing to me how I still have to try to convince certain people in my life that I I am truly sick! I guess it’s time for some new acquaintances! Thank you for you’re amazing article God bless you!

Oh Denise, I couldn’t agree with you more. I have no family, what friends I do have are very, very few. People look at me like I’m lazy even though my feet are swollen twice their size. I continue to go most of the time despite the debilitating pain I live with daily. I often hear, “You need to go to the doctor!”
Why!?
They know about the opioid injustice and if they forget I most certainly don’t care to remind them. I am now 50 something but still feel young at heart, that is when it’s not breaking. I’m not on Facebook or social media groups because I’m a very private person. I feel as though if the people that know me have walked away, I’m surely not going to turn to strangers. Please don’t get me wrong, for of course if this helps anybody I’m all for it! Yes ma’am you are most definitely right, I feel like I’m in junior high again. Matter of fact I liked junior-high much better than I do what I’m going through now and I was far from popular! I was made fun of there but let’s face it, I was dealing with a bunch of kids, not adults. You sound like a strong person. I shall pray that you can find a way to make things better. May God bless you and continue to give you the strength to keep on keeping on.💖