Support Groups, Chronic Pain And Why Kindness Matters

Support Groups, Chronic Pain And Why Kindness Matters

By Suzanne Burnett Stewart

suzanne-burnett-stewart

Suzanne Burnett Stewart

When we are in hurting, it’s difficult sometimes, to feel another  person’s  pain.  I am a founder and administrator of several support groups online. Some are for chronic illnesses and pain, while others are for fun and socializing. I’ve noticed that my group for cat lovers,”The Scratching Post”; is very different than my other groups that support people living with different kinds of chronic pain. They’re different because people who are there to hang out and talk about their cats are usually thinking more positively and  they’re possibly in their happy place. Those of us who struggle with pain, may feel a various number of emotions. We bring those emotions into the group setting. Luckily, in the support groups that I run; I have not had any trouble with drama, in-fighting or bullying whatsoever.  I tend to think that it is because I have been the sole administrator and I take care of anything and everything before it happens. I check the “new  member requests” very thoroughly.  I try to keep my groups safe from harm or any kind of researchers that want to “study” us/them. I have had people impersonate a pain patient while requesting to join my online support group. Awhile back, I had a few interns from various countries, who wished to “study” the persons with CRPS or Invisible illnesses, so they tried to join one of my support groups.  I didn’t admit them because I had a bad feeling about their answers to my questions. Finally, one of them asked me again, to join.  He told me “he wanted to join so that he could study people in the group!” I blocked him immediately!  I would never allow them to join any of my groups.

By doing a few simple tasks before allowing someone to join, I keep my support groups safe. I look for “signs” on their pages and I ask several questions via private message. If their page is bare, without even a cover photo or profile picture; I don’t respond to their request to join. If it just looks a bit “private” but they’ve been on Facebook for several years, then I ask them the questions that I will post below for you. If they have a few friends in my support group(s), or if they are referred by someone in the group; I usually just welcome them to the group and don’t check much more. I will ask the person who referred them or the people they have as their “friends”, if they know them well or if they are just an acquaintance?  Here are a few of the questions that I ask a prospective new member in one of my online support groups:

  • First I will make a statement something like: “Hello, my name is Suzanne and I’m the founder/admin for the group that you have asked to join (then I name the group)”.  Then I’ll say, “Please don’t feel singled out, because I ask all prospective members the same questions. I like to just get to know you a little bit to make sure that you are in the right group for what you want/need.”
  • Secondly, I will ask them, “How did you find this group? What were you searching for?” (Because my groups are mostly private, which means they can be seen in name only but the posts are private)….this also helps both of us make sure that they’re in the right place.
  • Then I might ask, “What makes you want to join this type of group? Do you live with __ or __?” (*Chronic illness, invisible illnesses and/or RSD/CRPS), or are you a Caregiver?
  • Next, I will say “When were you diagnosed? Where do you live?”
  • Then I will check everything out and usually allow them to join
  • If they don’t or won’t answer any of the questions, I don’t allow them into my groups. There are many other groups out there and I just want my members to feel safe.
  • If their page has zero information, zero photos and nothing that you can see whatsoever, that is a bad sign and I just usually “ignore” that request to join.

Some ideas for Administrators and moderators of groups already ongoing are:

  • Check the group regularly and just look over the new posts as they come in. Respond as soon as possible.
  • Look for abusive language &/or aggressive behaviors
  • Watch for a person that may be “picked on” or who has the anger of the group “dumped” on them. Act accordingly to figure out and fix the problem.
  • If you have spoken to someone a couple of times and they are rude to you or other members, it’s time to take them out of your group for the members’ sake
  • Ask for help, as I just recently started doing. I just couldn’t be everywhere and do it all. I asked for volunteers, for people who wanted to do some of the things that I cannot keep up with. Such as checking out all of the new members. Watching for any abusive, nasty or negative language or posts; and then telling me about them. Then I can decide whether to delete the post or talk to the person. Either way I will speak to the writer of those kinds of posts; it’s just a matter of before or after I delete it. My new moderators have the choice if it is a very abusive post to just delete it and tell me who and what, later.
  • Make sure that if you do ask for help, you choose people that you relate well with. Also persons who you have known for quite a while and you trust them and their judgment.

Unfortunately, many who live with chronic pain and illness, don’t always have the most supportive families or friends. These types of people also try to show up in groups to find out information for the “family”. That is another article in and of itself about Malignant Narcissist’s or abusers. If you have a supportive family, that is half the battle; it’s wonderful for you and that alone can help with your healing.

Whether you are a founder/administrator, a moderator or a member of an online support group.  Try to think first before you write, or at least before you hit the “send” button. Remember that in Facebook support groups, you have the chance to go back and delete what you have written. Just in case you were terribly upset (we all can feel that way sometimes) and you want to get rid of your post before another person’s feelings get hurt or worse. Never carry private or specific information from one group to another. If in doubt, always ask the administrator(s). If you want to re-post an article or something similar, then go to the original website where that article was posted and share straight from there. This way you aren’t taking a post from one group and sharing with others. Usually it is impossible to “share” between private groups anyways; but just in case.

We all continue to learn and grow in our lives each day. I’ve made mistakes before and I try to make amends or change whatever I can, so that I don’t repeat the error of my ways. I do my best to think first before I react or say something to another person, whether they are a friend or foe. Regardless if they are online in a group or out in the world in some kind of group setting. We are all humans and everyone feels hurt when someone is downright rude or is treating us badly. I want to add that if you are going to comment either way about something that someone has said, written or done; always be sure that you know all of the facts first. Don’t just read one line of something that someone has written, and then make a rude or cutting remark.  Don’t try to guess what someone means when they write a sentence or two in a group post online.  Sometimes the short or hastily written words cannot depict the true feelings, ideas or thoughts of a group member.  Keep in mind that some people are better at expressing themselves with spoken words and others are better at writing. Try to not get bothered by the small things, and think about what the “tone” of the words feel like to you; even if you might’ve said it differently.

When all is said and done, remember that we all inhabit this internet world together. We need to be as kind, loving and gentle as possible. There are always times when we say or do the wrong things. What we do afterwards, or the next time; is what matters most. Be kind and remember that the person you are upset with may have a whole mountain of issues, illnesses or problems that you don’t even know about.  That doesn’t give them the right to abuse or hurt you or others in any way. But just get away & remove yourself from the situation whenever possible. It never hurts to explain yourself, if you feel that someone has gotten it wrong or judged you wrongly.

Lastly, please remember in the support groups for chronic pain, illness, grief, abuse survivors etc….these people are hurting a bit more than the average amount.  Try to be understanding and be a good listener, especially in a support group.  Give hurting members; those who are in much pain either physically or emotionally, a little leeway. Remember to be gentle and kind.  If you felt hurt by the actions or words of another member in your support group, step back for a moment and think. If you forget and then realize that you retaliated against someone in a group, because you felt angry or hurt; try to make amends. Try to put yourself in someone Else’s situation, if you know it. If not, then try to just be thoughtful of others feelings. Treat them how you would like to be treated.  Remember that Kindness matters!

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 19 comments for this article
  1. Joanna M at 7:33 am

    I guess I’ve been quite blessed, then…I’ve been part of numerous groups, both online and in person, over the past decade and had positive experiences. Some of the members weren’t “my cup of tea,” so to speak, but it was just for that reason, that they weren’t people I clicked with, as with any new people you meet, not for any drama or meanness.

    @ Caroline – I agree with Suzanne. EVERYONE in a chronic pain/illness support group is in pain! But imagine how horrific that group would be if all members lashed out at one another, defending themselves with the excuse of feeling mean when they are in pain. Trust me, we all have our moments, even full days, when we feel we’re at our last shred of humanity. But you WILL have to learn to control it to some degree when you’re with others, whether it’s in a support group or just regular everyday life, or else you’ll find yourself pushing people away. That won’t help. I wish you luck on your journey (because it definitely is one! It all takes time to process the changes in your life and self).

  2. Suzanne Stewart at 10:38 am

    Caroline- you prob shouldn’t be in an online type of open support group yet, because you cannot be mean no matter how much you are hurting. I have much experience with this, as my own mother was in pain since I can remember. She was very abusive, physically, verbally, emotionally etc. It’s never right to hurt or be mean to another person or animal because you’re in pain. Not EVER! You would need one on one help to deal with your anger and pain anger issues, (that’s just my opinion)-before you even try joining a support group. Everyone in that group may be in as much pain as you or worse or maybe less, but no matter what our pain levels are, everyone deserves love, respect and HOPE.

    Tim- I’m an advocate and I do you tube videos, write letters and I call senators and house reps to advocate for chronic pain patients. I let them know that the medications do not make a true pain patient get high nor do we crave them, nor do we use them for anything but pain. Saying that our pain is not = to cancer pain, who would know this unless they’ve lived with both? In fact the pain of RSD/CRPS has been described as #43 on McGill pain scale & compared to non terminal cancer, a person going thru child birth unprepared and amputation of a digit without anesthesia

    Pops- no worries of the DEA or others in my groups either because in my group no one is allowed to name their meds or any specifics: must be in private messages if they need to discuss something….that’s right in my rules/mission statement and all persons in group must place their name in comments after reading rules. It’s so I know for future reference that they do in fact , know the rules. Any provoking or rudeness, meanness is ZERO tolerance in my groups & all members know that going in.
    I never allow giving out Dr’s names either unless private messages & I learned my lesson about that even!

    Kathy C. -You’re so right!! The #1 reason that I started being so vigilant as a “newbie” in 2007, is because I needed to keep my family away. I was told that “I’m the worst case of childhood trauma-abuse that SSDI had seen in past 36 yrs way back in 1990’s when I was 1st approved!!

    Michael L- I just wanted to let you & others know, that one of the first items I have in the files section of all of my groups is the free # for the suicide hotline!

    CINDI McElaney- they’re on fbk & I mention above were to find them. I hope this helps?

    HJ- I’m so sorry for your experiences, they sound despicable and I’m sorry that happened to you. Those things have not happened in any of my groups. I have removed articles if I thought they might inflame a member or if I thought someone was pushing an agenda or pushing their group inside of my group or pushing their products in my group ! Not allowed to share from group to group either. The way to share an article is to go back to the original place on www where it’s written and share on your own fbk page if it’s something not good for a group. If it’s good for a group then share from that place, never share between groups.

    Robin Taylor, please come and find me, I’d be pleased to meet you! My group “invisible diseases/chronic pain would prob be best for you and if you live in or someplace around Michigan or midwestern states there’s my “Michigan & Midwest pain warriors”

    Lee- last I heard, they’d changed their minds and allow kratom again until more research is to be done

  3. Laurie at 5:30 am

    HJ-
    I also ran into the same problems with certain forums where you did. There are good, more supportive ones you may wish to put a tiny toe back in the pool and try. The only rules in all of them is to not mention vendors. A lot of the forums are run by people with an agenda.
    But you can find people who wish to discuss topics in the way you describe. One in particular is on Facebook and is called kratom:end chronic pain. Though the topic is kratom, there are subtopics with support for every issue under the sun. Many supportive and open minded people can be found there. I hope you don’t find any more unnecessary abuse online.

  4. Laurie at 5:17 am

    Hi Lee,
    Kratom is being targeted again in 2 states. It’s currently legal and quite available by reputable vendors, otherwise, so far! Please see the American kratom assoc dot org website for the latest news on kratom.
    Hope this helps. Laurie

  5. Suzanne Stewart at 7:21 pm

    Hello all! I’m so glad I could be of some help to some of you! That makes me happy! As for being “soured” on groups, I’d say that you just keep on leaving the groups where you feel hurt or put down or judged. But if you need or want a group, don’t give up! I’ve had my “Invisible Diseases/chronic pain” group since 2007! Never had there been s drama yet! I’m not kidding! But at one time there was 1,000 ppl and I felt like no one was talking . So I mentioned tonmfmberd that if they wished to stay in group, please let me know or if not, after a week, I was weeding ppl out. So then I got it down to 350 or 400 ppl. Then if someone came back and asked, I’d put them back in. But sometimes ppl get into groups and never participate and don’t even know how many groups they’re in lol!! But I’m sorry for any of your bad experiences H.S.! Thank you for wanting to join my one of my groups to the others who mentioned this! I’ll tell you the names and if you wish you can look for them and request to join? 1) RASEforCRPS (meaning: Research, Awareness, Support & Educate for RSD/CRPS) 2) Invisible Diseases(Chronic Pain) 3) Dysautonomia/POTS & Pacemakers 4) Michigan & MidWest Pain Warriors …….
    Lastly I have a fun group for Cat lovers & Cat parents called “The Scratching Post” or feel free to PM me as Im the “Suzanne Stewart” who has (US Pain Ambassador) under my name on Facebook! I hope this helps you!

  6. Adam Pfeffer at 4:07 pm

    Happy New Year to everyone! A special thank you to Ed Coghlan for offering this wonderful platform that helps educate and inform those that suffer and those that love, support and care for them! Also Ed, the time you have shared with Livesupportgroup.com, the wisdom, knowledge and friendship has been so greatly appreciated! The National Pain Report is more than just a resource, it is a safe harbor and a compassionate, brilliant friend! Suzanne’s article offers a glimpse into the complexity of running organizations and groups that offer support and information. Suzanne, we at Livesupportgroup.com enjoyed reading your informative article and can surely relate to your information. We offer anonymous, free, peer to peer support and offer special guest doctors, authors and other professional speakers in the hope that our members can learn and feel love, support and understanding. Many people are suffering alone and my message is simple, you don’t have to! Groups like Livesupportgroup.com, Suzanne’s and others, are out there! Keep an open mind and reach out. Many of us have the same concerns, hopes, despair and needs. Sometimes just knowing others are listening, caring and sharing is enough to offer the strength to face another day. It is not about the medicine we take, the afflictions we battle or your politics, it is about human interaction. We are social creatures and the energy we offer each other can nourish the soul. Kudos to those that enter this arena and reach their hand out in humanity!
    Adam Pfeffer, President
    Livesupportgroup.com

  7. Tim at 3:51 pm

    I have been a chronic pain patient for almsot 20 years. I found from the very beginning of suffering from chronic pain, it helped so much to talk about my experience with constant pain as well as to listen to others chronic pain experiences. I think it was partly to attempt to find out how others coped with pain in their everyday life and just discussing our situation made us feel as if we’re not alone in the silent world of pain. Taking almost 5 years of injections, infusions, expensive back braces (in my case), physical therapy and many different types of medication trials, my “specalist” and I finally found what works for me. Can’t understand why the CDC believes that if not in pain with cancer, our pain level can not be “too bad”, thus treat all chronic pain patients with the same dosages of opioid medication. All health problems must be treated on an individual basis. Even and especially………chronic pain. It does not make any common sense that all non cancer chronic pain patients should be treated with equal amounts of medication. We all learn very quickly our bodies adapt to opioid medication, some of us a little slower, some a little quicker. When and if a patient finds the proper medication to relieve pain sufficiently, has no detremental body function change with opioid medication, manages to reach a level of dosage that keeps the pain suppressed enough to function daily and even manage to stay employed WHY on earth would ANY government agency want to tamper with that individuals health, happiness, and wellfare? I am currently on a reduction of my medication down to 80% less medication of what I have been taking for about 14 years. As a matter of fact I take 33% less medication now, than I did 5 years ago., but I am still being reduced 80% MORE. The reduction in medication will cost me my job from the lack of being able to function, and I will have to file for disability just to stay alive. I understand when a chronic pain patient or anyone that loses their health gets to the point that they can no longer work. My wife is on disability but, she could work circles around me just 7 years ago. She won the womens eastern seaboard body building competition when she was 26 years old. She NEVER used steroids, never took ANY kind of medication, she would not even use hair tinting while with child, both of our sons. Who knew she would develop fibromyalgia? Who knows what will develop in anyones future? It WAS nice to know that there was help for incredibly intense, never ending pain! Nevertheless, I will keep talking about insufficient medication for the non cancer chronic pain patient. Talking helps, and maybe the right words will fall on caring ears hopefully in the not too distant future. I am thankful for this and other pain related sites so we may have a voice, if just for each others sake..

  8. POPS at 2:08 pm

    Here is another bit of advise. There are a lot of pain support groups on social media who have been infiltrated. Not by reporters doing research on abuse, or not by anti-opiate MADD mothers, but by agents of law enforcement and the DEA. These are profilers for government agencies looking for people talking openly about the medications they use and even the substances they have deemed as illegal. In one of my groups I found that they are usually the ones who are prone to cause problems like instigating arguments between legitimate pain sufferers and causing a serious meltdown in groups.

    They know the members who are on the edge or are easily provoked into an argument because that’s what they do for a living, they profile. I keep a list of potential agents I personally run into and warn group administrators if I see activities that will start problems. My suggestion to everyone is that these infiltrators are out there and will act like your best friend on Facebook. They are good at gaining your confidence until they drop the hammer. They multi account and even hack our fellow pain sufferers accounts. Their goals are to gain evidence against the pain community and use it all against us.
    Just ask yourselves this.
    Has anyone ever tried to create a Facebook account in your name that wasn’t you?
    Has anyone of your fellow pain sufferers ever accused you of saying you never said?
    Has anyone ever offered to sell you or asked you if you could get them Marijuana products?
    Also, never give out your doctors name or the medications you’re prescribed. It pays to be overprotective of your information and even a little paranoid.

  9. CathyM at 1:43 pm

    Thank you for this very clear and helpful article! I’m going to share it with many friends – it’s good advice for any online group, and especially for those of us looking for support for chronic pain. I’m sure your online groups are very safe places!

  10. Bob at 12:50 pm

    Suzanne and HJ both raise excellent points that relate to the divide-and-conquer mindset imposed by the nation’s media and political elite. Each group and subgroup of individuals with different ailments, is set against the others. Once we are fragmented, we are powerless.

    I advocate instead an inclusive approach.

    It’s a moral truth, that if 1 person needs a kind of medicine to survive and I outlaw it, I have killed that person.

    It’s such a simple truth, that by stating it, almost every reader grasps the truth of it.

    So is the corollary. If I vote to outlaw that medicine, I, along with all the other voters who voted to outlaw it, am responsible for the death of the person who needed it to survive.

    If we don’t have factual knowledge that absolutely proves a medicine should be illegal, none of us should ever vote to make it illegal or keep it illegal. Otherwise we are complicit in killing somebody by force.

    I find that when I elevate the discussion online, by supporting everyone’s right never to have any medicine taken away from them by force, some people relax immediately. And others have to hear the message several times, as they anticipate some sort of trickery built into my words, before they, too, see the advantage of simplicity.

    Everyone has bad days. Everyone gets angry over what other people did. Everyone wants to express that anger somewhere. Relieving that anger is essential, if we are to relax and heal. If we express that anger at other people, we harm them. They react. Now the anger multiplies.

    If we express the anger at a bad idea, we conceive of better ideas and move on. Everybody learns. Everyone is less angry. The bad idea we simply outgrow and discard as useless trash.

    Throw away the useless trash idea, that some medicines should be illegal. Then instead of fighting with each other, over what medicines we need to survive, we let reality take it’s course. Medicines that are totally useless to anybody, are simply bad ideas in a bottle. If not one person on Earth benefits from a useless medicine, nobody buys the useless medicine. It gets abandoned because it is useless.

  11. Kathy C at 12:30 pm

    Thanks Suzzanne,
    People that use or monitor groups on the Internet need to be vigilant. There are Industry Forces infiltrating some of these Patient Groups. They monitor them so they can use the Data for their Purposes, usually Marketing, but who knows. The Internet is a wild and woolly place. So many problems can be traced back to Pharma funded “Groups and Advocacy”. Once they take money from an Industry they are compromised, they may appear to be operating in an impartial manner, but their Agenda should be avoided. Be careful with Family also, they could troll theses groups to look for Dirt, especially if there is money involved.

  12. MichaelL at 10:44 am

    Very good advice. I have often respond to people telling to “kill myself” with a response informing them that I choose to maintain my self esteem, refusing to let anyone who thinks they can take it as very ill informed. Having attained an education level that only a small percentage of the people of society do, knowing and trusting my spirituality, my intimate self, better than anyone else can, I am the only one who has the knowledge to determine my self worth. Why do people want to destroy others’ self esteem? My only guess is that that person has a problem with their own self esteem. Interestingly enough, while once being evaluated by professionals at a rehab facility after a broken back and cauda equina injury, the doctor wrote, in her report, that she found my accomplishments to be, almost unbelievable. She even suggested they might be confabulations. That professional, a psychiatrist, did not understand that a person who came from the poverty, where I had started, could have such a plethora of experiences. From being a gear head in high school, repairing and restoring my own classic vehicles as a hobby, later on in life, a self taught musician, being educated as a physician, and boarded in two specialties, having attended graduate school, educating future physicians, as a graduate student. Heck, I found it really hard to believe everything I had done, after reading her report. Thing is, it was all the truth. I have no reason to doubt myself. My self esteem was created through hard work and accomplishment. It is not pride. It is knowing that I accomplished something that no one in my extended family (both sides) ever accomplished by graduating college. Then, I went on to get more education that 99% if the people in our country. I did that after being told that a mediocre high school student, who just barely graduated in the upper 1/4 of his class, might not make it in college. I commend you for screening to prevent abusive people from trying to hurt others, who are already hurting! None of us deserve abuse, or have the right to verbally abuse others online!

  13. Bill at 6:54 am

    Hi Suzanne, love your story here, I am also administratior of chronic pain and blood clots groups, and do what you’re saying, I always check the person who is requested to join, I check out their profile, you have great points here.i try to keep a good clean safe environment for all members, they love my groups, but yes its hard to keep the bad ones out,but I do my best and get rid of the negative. I try to make the members feel like family.

  14. Cindi McElhaney at 5:50 am

    How can we find some of your groups?

  15. HJ at 5:32 am

    PS – I think the next treatment with a religious following will be medical marijuana.

    I was accused of being a “pill popper” because I didn’t think that medical marijuana would suit my needs. I work for a religious non-profit that would frown upon use of MMJ. I have a huge problem with fatigue and would be concerned that MMJ may exacerbate either that problem or my existing weight/over-eating problem. I also have lots of allergies to grasses, pollen, and foods including seemingly harmless things as spaghetti squash, kale, barley… (allergist-confirmed.) So, I’m especially cautious about anything new that I might ingest — as seemingly nothing is truly hypo-allergenic.

    I support making it available to others who would benefit from it but I worry that with the war on opiates, that there could come a day when I’m told that I need to stop the opiate that works for me and that I’d have to start MMJ if I want any sort of treatment at all. I support the availability of a wide range of treatments and the recognition that there is NOT a one-size-fits-all treatment and to suggest so is actually HARMFUL to the patient population.

  16. HJ at 5:25 am

    I have soured from support groups. I witnessed drama and abusive behaviors in a fibromyalgia/CFS group that I spent a great deal of time in before I decided it was unhealthy for me to continue to participate.

    Then, there are folks who are so invested in their treatment of choice that they attack others who they perceive as not being “true believers.” At first it was low dose naltrexone. I tried to ask my doctor to allow me a trial, but as this isn’t a mainstream treatment, my doctor balked. I had people telling me that I should push my doctor harder or find another doctor. I found that pretty intrusive.

    Then came kratom. I was kicked out of a Facebook group because I shared an article:
    https://usnews.newsvine.com/_news/2012/03/19/10760892-asian-leaf-kratom-making-presence-felt-in-us-emergency-rooms
    I was told that I was spreading mis-information by simply sharing the article. Kratom is touted as being “all natural” and as such has gained a halo as being “perfectly safe.” While it may be safe for most people, it seems to me from what I’ve learned that it should be approached with caution and perhaps with possible drug interactions in mind… which is how I approach all supplements and prescription medications.

    I think it’s unfortunate that group owners would so invest themselves in a treatment that they would disallow and censor differing viewpoints is shameful. Actually, since I am treating MY BODY, I want all information to be available to me. The group should have had PRO-KRATOM in its name if they were so invested in that treatment that they would exclude anyone who shared information perceived as being “against kratom.” The group moderator and I became equally soured of each other… as I felt it was unbelievable that I would be kicked out for sharing information.

    What happened to, “your mileage may vary” or “you may have a different experience”? Why am I expected to have some religious adherence to the “treatment of the day”? There is no cure for fibromyalgia yet. While I strongly wish there was a magic bullet out there, I went down the path of investing in this treatment or that massage tool… many of which are collecting dust. For all the money I spent, only a few remedies carried through over the years because I found them beneficial or practical or didn’t suffer side effects.

    I have recognized that there is a grief process associated with living with chronic pain or chronic fatigue (or both). It seems that for people in pain, the depression and anger/frustration stages can be especially intense. I would like to share with others who understand, who would exchange information and talk about coping strategies… but not at the risk of exposing myself to emotional harm. I made the mistake of becoming emotionally invested in one online forum which broke down into very personal attacks and people who wanted to control content (less talk about research – it’s boring! Natural treatments only! Or my experience is the only VALID experience: i.e. Tramadol doesn’t work for me so I’m going to disregard that it worked for you!)

    I’d love to see a more friendly atmosphere that welcomes DISCUSSION (shared experiences, agreement AND DISAGREEMENT/conflicting opinions shared respectfully and openly) but I have limited energy so I’ve opted out of “support” groups. The pro-kratom group I mentioned above was billed as a “support” group… but apparently they only support you if you are sold hook-line-and-sinker on their treatment of choice.

    No Thank You.

  17. Robin Taylor at 4:10 am

    Suzanne, thank you for such an informative article on how to treat others in online support groups. I would like to join one of your support groups for chronic pain sufferers. I have suffered from fibromyalgia (at least that’s what my Dr thinks it is) for many years, but was just diagnosed 3 years ago.

  18. Lee at 3:16 am

    Does anyone have an update on the status of kratom? I have RA, OA , Cushing’s, and can’t take standard meds. With CDC pushing for cutbacks on opioids, kratom has been a lifesaver. Any news would be helpful.

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