Not all Support is Good Support

When I stepped outside of myself and decided to welcome the world into my sometimes confusing and painful experiences with Crohn’s disease by writing a blog and creating “The Crohn’s and Ulcerative Colitis Diaries” page on Facebook, I had no idea that I was opening a can of worms. (And no, not the good kind that are helping some Crohn’s disease patients reach remission.) I was excited to share fun big cat memes about Crohn’s fatigue, post informative news articles and research into new IBD treatments, and to write my very raw story to help those who are alone, at home, wondering how and when their life veered off onto Rotten Bowel Exit #666.

But then the lovely world intruded. My support team widened, and I entered other groups where most of the community was wonderful and welcoming, while jealousy, anger, and judgment simmered just beneath the surface.

I can’t tell you how many times I’ve yelled at my computer (but I can tell you it’s filed a restraining order against me.) I’ve read heart-felt posts written by Crohnies who are scared and wondering if they should check out of life. They’re exhausted from the pain of having bile acid diarrhea rip through their ulcerated guts and past their abscessed fistulas, and they’re turning to a place they think will help them. Within moments, they’re attacked for being too “whiny” and told that they’re bringing their disease upon themselves for not pretending the world is filled with pastel unicorns and cheezburger kittens.

I’ve also seen people attacked for sharing that they’re taking Remicade and Imuran to control their disease. People who aren’t doctors tell these already-scared patients that they’re going to get cancer or they’ll die from liver failure because a cousin’s cousin’s mother’s hamster’s wife’s friend died after receiving one dose of Remicade. The person attacking this patient (who is now certain they’re going to die) will tell them to try “all natural” treatments like medical marijuana–which is unfortunately not legal in most states and is a one-way ticket to jail and a criminal record for most of us. The scared patient is then accused of bowing down to the pharmaceutical industry (which is apparently code for “Satan” in many groups even though this industry saves lives).

At first I was surprised and offended, wondering how in the hell someone with Crohn’s disease can attack another patient with the same debilitating disease? I couldn’t figure out how a participant of a chronic illness support group could justify judging someone who is facing the nasty end of a scalpel and is afraid they’ll die on the surgical table, leaving their kids behind.

I realize, now, that my expectations were unrealistic, and that just because we’re all suffering doesn’t suddenly make us angels. People who like to “stir the pot” in the real world will stir it just as hard in the chronic illness community. People who are self-righteous at home and at work don’t turn their personalities off before stepping into what I’ve always naively assumed were “safe zones”.

We all know that not everyone has a severe form of Crohn’s disease and that some symptoms can be mild. Some people don’t suffer every day and don’t believe that others do. We all have different coping mechanisms. Some people do feel better when they’re always positive, skipping through the buttercups in their mind. Just because those buttercups don’t grow for me (seriously, can someone send me some magical seeds?) doesn’t mean I’m any better or worse than the person who uses that defense mechanism.

But it doesn’t mean I have to put up with the judgment. I’m responsible for my own physical and mental health first–we all are. Not all support is good support and all of us have to make tough decisions even if that means backing away from the people who make us feel worse.

I know I can’t help everyone–and not everyone wants my kind of help. And for the folks who do, you can find me on my Facebook page where the conversation is compassionate and mean comments are deleted. It may not have as many “likes” due to lack of drama, but I promise you that you’ll be safe and supported there, no matter what treatment path you take.

15 thoughts on “Not all Support is Good Support

  1. We sure do open ourselves up with the goal of being supportive and help each other. It is disheartening when the ugliness comes out from some people. I feel bad that they are so filled with anger or sadness that the only thing they seem to know how to do to feel better is to try to make someone else feel as bad as they do. I think you are doing a great job with your blog and Facebook page. I don’t comment much but I read it all. This post encouraged me to participate and say something. There likely are a lot of us that feel just like you do and I for one, am glad you delete the nasty stuff!! Some people need to remember the old adage, “if you don’t have anything nice to say, don’t say anything at all.”

    • Ironic, Katie..I was just on the phone discussing this very subject. Some have love, gratitude and TRY (even with human frailty) in the worst of times. Others just want to tear down, analyze, and yes, hate, no matter the day, time or reason. It can make this illness a lot harder. I have had to detach, walk away, have NC (no contact,) selfish as that seems, with a few ppl. Do I NOT love and wish them well? Absolutely not, all the best! But it’s self preservation. Wishing all of YOU well, and healthy support systems.

  2. Trying to do good and support others is a very selfless thing to do, you will always get the negative when trying to do positive things. In the end if I help one person in a positive way, so they can view there condition in a more positive manner, then it is worth it.
    In regards to Humira and biologic treatments, which I am currently on. I try and live for today. We are on this earth for only a short period of time, so if a treatment that is toxic but helps for today, then I will just have to take it and not think about tomorrow, as living with Crohn’s is just too much to bare without any rest bite for me.
    Keep doing what you are doing, me and many others enjoy reading about your journey and I for one no longer feel a lone as I once was with this disease, which helps me daily to overcome the challenges, this disease and it’s complications bring everyday.

  3. Nice post. I agree with you. Thanks for writing so eloquently my exact thoughts!! I so appreciate that we think alike! Having a rough day today. So your post was a good uplift and liked your sarcastic humor. I am trying to relax and do my Scrapbooking, while kids do homework and hubby is watching football. But crohns is kicking all the fun out if it for me. My mind wants to do my hobby, body is not cooperating. My stricture must really be getting narrow. Ugh. Bloated, pain so feet up resting on couch with heating blanket ( cold here in Detroit). Love that my family is so supportive of me!! I also connect to you Christina. Thanks!!

  4. Well said Christina. I’ve found that when people “go off” on me or others around them it’s often because of their own pain; I try to not take it personally (often a tall order) and remind myself they could be having a bad headache, or a rumbling stomach, or any number of other invisible but very real diseases and disorders, and painful situations and environments that can cause us to be impatient & short & rude with others. It’s also easy to trivialize other peoples’ pain and not understand what is going on invisibly under the surface… cluelessness is I suppose a kind of disability that we need to be patient with to the degree possible and work to eliminate. Thank you for being good support for me!

  5. Hey Christina! I loved ur blog entry, always do. I wish you the very best and am so sorry that in the midst of ur pain, you have experienced judgement, jealously, etc..I hear you. I totally withdrew from the crohn’s community. I guess I could have handled it differently, I used to be a VERY different, feisty person..before the years of agony, fear, gut-ripping pain from fistulas and length of bowel that needed to go, then the body’s ultimate betrayal…when the cells become dysplastic..the ostomy. Oh…WHY
    Can’t we just embrace each other’s pain and not have the ” suffering Olympics?” Why judgements, and opinions..bad enough from people who cry when they have a “tummy ache” but think they understand a life of IBD, but the IBDers themselves! There are times I would have gotten in there, I used to go to CCFA mtgs in my 20s..a lot of ” YOU think YOU had it bad…WELL…I….blah, blah”
    The suffering Olympics. I really don’t want to join…there are exceptions, I know. But for now, I am rallying troups to get support for myself , because I have gone three years since that first surgery without REAL therapy for trauma. Can’t expect to get that on line , in a meeting. I guess, for me, it has come down to accepting..dealing with the disappointments and taking responsibility for finally taking the bull by the horns and getting that help. Ur blog was spot on..i laughed, i cried, I totally related. Keep writing and despite the noise around you, keep your eyes just where they are, cause in blogging you are not just helping get it all out…you are validating many. That’s an awesome thing.

  6. Hi Christina: I was worried abt you after your Oct post, so glad to experience your insightful writing again. I live in Canada and mostly feel supported as part of a CCFC facebook group, but sometimes a few people in this group do start fighting with each other, which is quite painful, as aren’t we all in the same general boat? Can’t we have compassion for each other and the treatment choices we have made? Sometimes I find someone just comes out of left field with a really extreme condemning statement. Most recently it was someone with IBD warning that the flu shot was full of “poison” and attacking others who felt they were taking care of their immune systems by getting it. And this same person was taking Remicade, which nade no sense to me that they were freaking out over the flu shot. I imagine that these people who are so extreme and attack others are themselves hurting, but, like you, I don’t know if I want to hear their unsupportive, loud opinions.

    Really, it’s bad enough that most of the “normal”people in my world don’t have a clue about what I go through with IBD. So when those with IBD are also unsupportive, it’s very discouraging to me. Talk about feeling misunderstood. Thank you for writing about this topic.

    And how are you doing?

    • Yes, I agree Maureen…I am really glad Christina brought the topic up. It’s not easy to talk about, but it’s better than ignoring (and withdrawing ) which is the path of least resistance. But that doesn’t help. Very courageous.

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  8. Unfortunately support groups are unable to weed out the mean and ignorant who feel they have the right to pass on their narrow viewpoint of life unless the administrators are told about it. Don’t hesitate to let administrators of these groups know about people who act like this. They can then inform that mean, arrogant or misguided person of the effect their comments are having on others and if necessary ban them from the group. It is unacceptable for anyone to pass judgement on another. Unfortunately many people read things on the internet and take it as gospel and feel that anyone who doesn’t agree with them is open to attack. Fortunately the greater community is filled with caring understanding people. Thank heavens there are people like you Christina who open their heart and life to others to help them come to terms with this awful disease. thank you for everything you write. As usual it touches a cord with me.

  9. I was diagnosed in June 2013 and I I am glad I stumbled across all of you and reading Christinas post. I have a dr that is at the end of his wit with this. he is the one who got me the definitive diagnosis through bloodwork,stool samples,lower and upper scopes. onw last double baloonenteroscopy, after finding several lesions in my smaller intestines some had been bleeding and one still was. so my diagnosis is ulcerative colitis and chrons? or crohns colitis. I am going to an expert next week hopefully he will be able to help me. I vomit more than the diarrhea as I wear a pain patch which causes constipation. I call them and they say go to er. that is not what I should be hearing. when I vomit it like it coming out my bottom. I know that is disgusting does anyone have this?? My presnt dr is nice but I need someone who would be able to answer me. I am on entocort and lialda yet I still have a horrible flare ups all the time.there is more please keep in touch. oh yes the part of family and friends not taking this seriously can really hurt. I have been very lonely. they heard me moaning in pain and asked me to stop.one of my best friends says join the club I have pain and diarrhea all the time. undiagnosed she manages to go out,go to dinners and eat anything and takes nothing for pain. my pain is dibilitating along with my multiple herniations of the spine causing nerve pain and damages,radiculopathy and the controversial fibromyalgia time to sign off thanks for your stories feel less lonely. Lin

    • Hi Lin! I’m so sorry you’re going through this. It does sound like you need to go to the ER. I know it’s not the answer you’d like to hear, but your doctor is admitting that you need more specialized help. If you’re vomiting what tastes like feces, you could have a partial blockage and be forming feces in your small bowel which is not good. Unfortunately, Crohn’s and ulcerative colitis patients have to deal with being hospitalized for bowel rest, IV fluids, and pain meds when they are blocked or flaring to the point where their bodies have become too weakened to recuperate at home. I’ve been hospitalized twice this year (and Lord knows how many times in the past 8 years) and it’s not fun, but sometimes it’s the only answer. If I can give anyone who is newly diagnosed advice, it would be that Crohn’s is a more like a marathon and not a sprint. It takes months and months to find the right medication and can take a lot of patience on the part of the patient. When a doctor tells you that it’s time to go to the ER, then it definitely is time to take that step. You should at least make sure your potassium levels aren’t too depleted and that’s something they will check in the hospital. Please keep me updated. Again, I’m so sorry you’re going through this. ~ Christina

  10. From time to time people just like to stick their ten pence worth in! I wrote my own post about the ‘preachers’ who are adamant that their au-natural product will turn hamburger kittens into dancing unicorns. I am all for sharing advise but some people with Crohn’s /Colitis like you said are already in a vulnerable state to begin with and I worry some may get seriously ill by taking wrong/bad advice. You are not alone in your frustrations! x

  11. Thank you. I have all the same fearful, compulsive thoughts when my pain flares (especially when I’m up at night hurting while the hubs sleeps peacefully.) “What was it this time that I did wrong/ate wrong?” “Why did I do this to myself?” “Why can’t I just be better and fasting (starving) all the time!?” I can barely eat solid foods. Hunger is constant. When I do eat it hurts for hours, it robs me of sleep. As if that wasn’t enough suffering right? Nope, I beat myself up on top of it all because I had some food, or a pint of cider or something else that “isn’t helping me heal and what is WRONG with me???” Really, really glad to see that I’m not the only one struggling with the self-compassion. I wish no one else had to go through this…but I’m also thankful to know I’m not alone.

  12. I’m 20 years old and was diagnosed with Crohn’s almost 2 years ago. I’m finding that sometimes Crohn’s has a mind of it’s own and sometimes I can’t control it. I’ve also found that SO many people try to pin my symptoms on what I’m doing wrong. It’s very disheartening, but I also know it’s a hard disease to understand sometimes and I try to take other’s comments lightly because they don’t have Crohn’s and they don’t know.

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