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Collision: When Judgment Meets Chronic Illness And Pain

If you’re like me, you have read before about the topic of judgment in the context of chronic illness and chronic pain. Perhaps you’ve read about people who were unfairly judged in the workplace. Or maybe you’ve read about people being unfairly judged by their very own family members and loved ones. I personally can’t think of anyone who appreciates being judged by others in this way.


The emotions that may spring up in conjunction with being judged can compound the challenges faced by patients since it can add emotional pain to the physical pain the person already experiences. Sadly, it is not unusual for chronically ill patients to find themselves in such situations. In fact, I daresay anyone who has lived with chronic illness and pain for any length of time can relate. Feeling misunderstood by people in the workplace (assuming the patient is even able to continue in the workplace) and feeling misunderstood by loved ones are all-too-common (and often maddening) experiences for a great number of people living with chronic illness. No one wishes to be misunderstood.

Today, though, I’d like to focus on a different type of judgment (than that of workplace people or loved ones judging the patient). It’s a type of judgment that I have experienced firsthand. Many patients I know have experienced it as well. It’s another form of judgment that can wound deeply and leave emotional scars as remnants.

Judgment from people we thought were “safe”:

  • What happens when judgment comes from unexpected sources?

  • What happens when judgment comes from people we trusted and/or thought “got it”?

  • What happens when we are judged by fellow patients?

    While this isn’t the most pleasant subject, I decided to write about it today because I’ve seen it play out in the lives of many people who live with chronic illness. Yet I don’t recall ever seeing it written about. Not in books, not in magazines, and not in blog posts… I’m sure someone out there has written about this topic. I myself just haven’t come across any writing pieces that focus specifically on judgment of chronic illness patients by chronic illness patients.

    What happens when judgmental, critical remarks are made by fellow patients? This scenario can induce a different type of pain.

    When patients feel judged by other patients (based both on what I have experienced firsthand and what I’ve seen with chronically ill friends of mine) the sense of betrayal can have an especially potent sting. Most chronically ill people that I know are especially caught off guard by judgment/criticism aimed at them by fellow patients. Each patient is unique. What works for one patient may not work at all for another. No patient is in a position to judge another’s choices or treatment plan.

    Judgment can mean many things depending on context. I may have chosen the gavel photo above as a visual but I’m obviously not writing about judgment in a legal context here. The “criticism or censure” mentioned in this definition of judgment is the best for for what I am talking about. The phrase “sit in judgment” listed there (under part b for “to assume the position of critic”) is what I am referring to. Essentially, the notion of criticism is key to what I would like to discuss. I’ve seen fellow patients become downright bossy regarding what they see as the proper course of treatment for me. (Never mind that it’s my body and that I don’t like it when people talk to me as if I don’t know how to advocate for myself). What patient likes to feel like she’s expected to obey a fellow patient regarding treatment options for her own body? Certainly not me!


    How many of you have ever experienced any of the following (from a fellow patient)?:

  • Criticism of your treatment options or implication that you had made poor choices?

  • Questioning how sick you “really” are and/or that person incessantly trying to “top you” (as if it were a competition to prove who is the sickest)?

  • Implication (or outright statement!) that you should disregard the medical advice from your own physician/s (and instead follow that person’s idea of how to treat your medical condition/s?)


    Personally, I think when one person feels “bossed around” in this way by another, it can be poison to the relationship. Unfortunately, it is not all that uncommon for people living with chronic illness to judge and/or criticize one another (whether overtly or in a more subtle fashion). Clearly this can be hurtful for the patient who feels he/she has been judged by someone who had previously been viewed as a “safe” person in whom to confide. Helpful ideas/suggestions are one thing. Unsolicited advice is another (especially when there seems to be an expectation that the person being “judged” really “should” take the advice).


    Some examples of categories of people who may engage (however unintentionally) in “judging” fellow patients:

  • Misdirected passion: From what I have observed, sometimes a person is extremely passionate about a particular treatment protocol or “healing path” (for lack of a better term). There is nothing wrong with being passionate! Sometimes, however, this passion can lead to them making comments that leave the other patient feeling judged/criticized. The trick lies, I believe, in not letting a passionate viewpoint (which may come from a very well-meaning place) get articulated in a manner that leaves the other patient feeling condescended to, viewed as not having done his/her homework, or feeling that the person judging him/her sees him/her as naive.

  • One-upmanship: Patients who engage in one-upmanship can be irritating. After all, when one is feeling sick and/or in pain and is sharing this with a fellow patient, the last thing they generally wish to hear is the person’s immediate launch into their own (longer, more serious-sounding) list of symptoms. I am not talking about two friends commiserating with each other here. Patients commiserating/sharing stories of similar symptoms can provide mutual support and make each person feel less alone! With one-upmanship, however, the balance is off. I’m referring to people who, quite literally, seem compelled to “top” the other person anytime that person talks about his/her symptoms. It’s not a competition but people in this category seem to think that it is.

  • Advising others to disregard medical advice: As virtually any person living with chronic illness is well-aware, doctors are not perfect. They make mistakes like any other human beings. Sadly, there are some doctors who are corrupt, misinformed, arrogant, and/or ill-equipped to diagnose and treat the illness(es) at hand. However, no patient is in a position to give advice to other patients along the lines of “ignore what your doctor says”. It’s one thing to diplomatically raise concerns for the well-being of a fellow patient. It’s quite another to leave that person feeling like you’re telling him/her to disregard what their doctor has advised. (This brings up liability issues as well). The notion of strong-arming an online acquaintance into ditching advice from his/her physician/s when the person suggesting doing so has never even met the patient in question (and when the person making the suggestion is not a health care professional) is risky. Suggesting a person explore options (such as getting a second opinion) is one thing. (That can be a very helpful suggestion). Telling someone (in so many words) “your doctor is incompetent” is another.

    Here’s the million dollar question… What do you do when a fellow patient appears to be sitting in judgment of you? What do you do when comments (be they subtle or blunt) are made that make you feel uncomfortable? I have had numerous conversations with people who live with chronic illness who have experienced these scenarios. I have found myself in the position of having been judged. What I’m wondering is how many of you have experienced this and how did you handle it? I would love to hear your feedback. Please take a moment to leave a blog comment. I think this is an important topic that affects many people. How can patients living with chronic illness/pain avoid falling into the trap of judging fellow patients? How can patients who feel judged articulate how it makes them feel when other patients judge them (perhaps without even knowingly engaging in judging anyone)?

    How can we encourage compassionate support between fellow patients and speak up for ourselves when we are uncomfortable with comments we perceive as judgmental and hurtful (if indeed we determine that it is worth speaking up in a given situation?)

    Your feedback on this topic is much appreciated. I believe it is crucial for patients to support each other (whatever personal choices they may make for their own bodies and lives) and avoid passing judgment on each other. Sometimes, there can be a fine line between diplomatically worded suggestions and judgmental/critical remarks that hurt fellow patients. What are some ideas for how to word suggestions so that they are not mistaken as/perceived as “orders”? If one has concerns about another patient’s well-being, what are the best ways to convey that concern without coming across as bossy or condescending?

    This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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    Reading: Collision: When Judgment Meets Chronic Illness And Pain
  • 11 comments

    1 moNo Gravatar { 11.07.11 at 6:39 pm }

    This is a wonderful post. Besides the usual “Are you still sick?” and the “WHY can’t those doctors make you feel better?” and “My God…all you do is sleep!”, I have recently been judged by a friend and it has broken my spirit. This is a woman that I have been friends with 40+ years. When I first became ill (I have Addison’s and Crohn’s), she was the one that taught me to give myself an injection. She helped me understand my medications. I called her often with questions. She is a nurse. Yes, a nurse. She recently questioned me and called me a liar and a sympathy seeker….on my blog.

    All judgement is difficult to deal with, but somehow I have handled it somehow or another, even if it is just by walking away. But this situation has me so upset, and I cannot figure out how to deal with it.

    I feel empathy for each and every chronically ill patient that has had to deal with this terrible behavior from family, friends and strangers.

    Again, great post!
    mo´s last [type] ..National Health Blog Post Month

    2 DarleneNo Gravatar { 11.09.11 at 12:14 am }

    Thanks Jeanne, This is an excellent post! I have one friend in particular that comes to mind. I have had IC and VV for many years. I went through a divorce, and have confided in her for years. She knows that my life, like many chronic pain patients, has become very restricted. We were talking recently and she actually asked me “what part of you doesn’t want to get better”! I found that a very hurtful thing to say. She actually thinks I am enjoying not being well. She wants to know what purpose it is serving me? I think you can see where I am going here.

    Thankfully I do have many friends, such as Jeanne, that are caring and compassionate, and understand we do the best that we can.

    Thanks Jeanne, for always being here<3

    3 JeanneNo Gravatar { 11.09.11 at 3:41 am }

    Welcome Mo!

    Thank you. It’s so true that people often ask the types of questions you mentioned. Any illness that lingers for a long time (i.e. that becomes chronic in nature) seems to result in many people around the patient not “getting it” and not understanding that chronic illnesses, by their very nature, don’t just magically disappear (no matter what doctors do). Our society seems, as a whole, to be clueless about the fact that many chronic illnesses are associated with fatigue or insomnia that can result in the need for daytime naps to catch up. Or, heck, illnesses may result in increased need for sleep due to the draining nature of unrelenting pain.

    I am so, so sorry that you have been judged by a friend. To have someone you’ve been friends with for 40+ years take on a judging role must be very hurtful. I’m sorry for your pain (emotional and physical). Having someone you have trusted for so long flip into a judging role must be incredibly hurtful. It’s very unfortunate that she has judged you. I’m so sorry. Sadly, when medical professionals reach the limits of their understanding of a given condition this type of judgment can occur. It is just awful that she called you a liar and a sympathy seeker on your blog! It seems to me that leaving such comments on your blog (a.k.a. your safe place to talk about your illness/pain) is a violation.

    I agree that all judgment is difficult to deal with and that walking away is sometimes the best option. I’m not sure what to tell you about the situation you mentioned. All I can think to say is that you may need time to process it. You may need time to determine if this is one of those “walk away” situations or if the relationship is worth repairing. I realize that trying to repair it could be very challenging in light of what she said and how she said it. You may need time to cool down, heal, evaluate things, and digest what transpired. If you decide to walk away, I would imagine you’ll need to grieve. After all, 40+ years is a long time. When a friend I really trusted and cared about judged me (and it really hurt!), I discussed the situation with my therapist to get guidance about how to proceed. This was helpful for me.

    I too feel empathy for patients who have to deal with these situations.

    Thank you! I really appreciate you stopping by. It enabled me to get to know you a bit and resulted in me finding your blog as well. I quickly found a recent post you did about judgment. Thanks again for leaving a comment.

    Darlene:

    Thank you! I am very sorry that your friend made that comment. That must have really hurt. I have never understood why some people get the twisted idea that chronically ill patients enjoy not being well. It’s so insulting when people say or imply that! I see where you are going… yes. I’m so sorry her comments hurt you. It is very unfortunate when people make remarks like that.

    Darlene, you are caring and compassionate in spades. You help so many with your supportive, thoughtful friendship. Yes, we do the best we can. I believe that anyone who doesn’t believe that is a potential drain on our energy.

    Like Mo, sometimes I decide that I just need to walk away. The sheer amount of energy I would need to expend to continue to interact with people who say hurtful, judgmental things to me often means it’s just not worth my time.

    Thanks to you, Darlene. You are always here and it means so much. <3

    ~~~

    Jeanne

    4 EndochickNo Gravatar { 11.09.11 at 2:14 pm }

    Jeanne –

    I cannot even begin to say how wonderful this post is! I wish I could write a more detailed comment, but at the moment my health isn’t so great. I just want to make you sure I thanked you for putting in the time and energy into such an in-depth, and passionate post.
    Endochick´s last [type] ..In Crisis

    5 JeanneNo Gravatar { 11.10.11 at 10:35 am }

    Endochick:

    Thank you! I’m sorry you are having so many health problems now. I know you are going through a challenging time! I also know how hard it is for you to get online (and type) now. I’m sorry about that. Thank you very much for your feedback. I’m sending healing energy your way!

    Jeanne

    6 AmandaNo Gravatar { 11.10.11 at 7:26 pm }

    What a fantastic post, Jeanne!

    I am sure that I have seen (and experienced) this, but for the life of me I cannot think right now. I’m blaming sleep deprivation, so I’ll try and come back to this at a later date when I’m a bit more with it. But as my memory is also quite poor right now I thought I’d leave you a comment to say I’ve read this and can you please gently remind me at some point in the future that I promised to respond in more detail when things settled down a bit xx
    Amanda´s last [type] ..Time for a Change!

    7 JeanneNo Gravatar { 11.11.11 at 1:22 am }

    Amanda:

    I’m glad you liked it. Please don’t worry about not leaving as detailed a comment as you want to right now. I know you are low on sleep and I don’t want you worrying about it. There’s no hurry. The post isn’t going anywhere. 😉

    Take care and try to get some rest whenever you can. Thinking of you. xo

    Jeanne

    8 Barren MotherNo Gravatar { 11.15.11 at 2:09 pm }

    I think there are many people who have experienced this. It is natural for us to feel passionate about each of our chosen treatments – I believe we have to in a way – it affects our life! But I do agree that we should not judge others chosen plans. We get enough of that stuff everywhere else. It is hardest when people who we thought were “safe” , fellow sufferers or not, hurt us by judging or even just in misunderstanding which at least I know for myself, we often take for judgment.
    Barren Mother´s last [type] ..Stand Alone

    9 JeanneNo Gravatar { 11.15.11 at 3:23 pm }

    Welcome Barren Mother!

    Thank you for your input. I think it’s pretty common too. I also agree it’s natural for people to be passionate about what helps them. Yes, I think when passion crosses the line into one person telling the other person what he/she “should” do, the person being told what to do seldom appreciates it. We do get enough of that stuff everywhere else. It’s true that it hurts the most when people we thought were “safe” end up not being so. As you pointed out, these formerly-considered-“safe” people may or may not be fellow patients. Yes, there can be a murky line between misunderstanding and judgment. Whatever label we put on it, it really hurts when people we thought were “safe” do or say things that hurt us, insult us, second-guess us and/or judge us.

    Awhile back, I wrote an Amazon review of this book: Silent Sorority. I don’t know if you’ve read it but I think you might find it interesting. The author, Pamela, has endometriosis and had a very difficult infertility battle. If you click here, it will take you to a post I wrote that will direct you to the Amazon book reviews people have written on it. I believe my review is currently listed on page 3 (of Amazon) on the book reviews. (The book has many reviews). I just thought I’d mention the book because Pamela talks about her infertility in a moving, thoughtful, insightful way. Thanks again for your input.

    Jeanne

    10 depressionandpainsucksNo Gravatar { 11.27.11 at 4:13 pm }

    Thank you so much for this post, It came to me when I really needed it.
    I too have been judged and it has hurt me a lot. It came from someone I looked up to and that I thought was not only a friend but someone that I thought understood me. This person has a similar condition to myself so we have a lot in common as well as being related. This person is a nurse and told me that I’m on too much pain medication, it hurt me a lot , to the point that I am now trying to reduce my meds. I know that it’s crazy to let it get to me to the point that I would do that but I’m sick of being judge by her and everyone else. My depression has taken a big hit because I’m not coping with the reduction, I have gone from a place of being at peace (sort of) with my pain to a dark place. And for the record, I follow my doctors orders and never adjust anything myself.
    Thanks again for your post.
    depressionandpainsucks´s last [type] ..Rain go away.

    11 JeanneNo Gravatar { 11.28.11 at 1:52 am }

    Welcome!

    I’m so glad you found it helpful. I’m so sorry for your pain and for the fallout you’ve faced from the judgments made on you (and on the treatment plan you and your doctor agreed to). It really is hurtful when people place judgments – and it’s especially cutting when it comes from someone who was thought to have understood!

    I have found that sometimes two people share a diagnosis but one may have much more severe pain or impairment than the other. Some of the most hurtful experiences I’ve been through (emotionally) in regard to being judged involved other people who thought they “got it” but didn’t. Sometimes people have just enough information to be dangerous. I think the problem can be even messier when the person casting judgment works in the medical profession.

    The person you mentioned may have a similar condition and may believe she understands (i.e. because of her training as a nurse and her own medical condition) but it sounds like you’re not feeling very ‘well understood’ by her at all. So, perhaps she doesn’t really “get it” as well as she thinks she does.

    Obviously, I don’t know the person you referenced and I’m just going by what you said in your comment. However, I can just sense your hurt feelings and I would imagine it must feel like a betrayal… that this woman you trusted has judged you in such a way.

    Add on top of all of that the fact that she’s a relative and it’s no wonder that you are hurt by it! In my humble opinion, your relative/person-you-thought-you-could-trust/nurse-who-seems-to-think-it’s-her-place-to-make-conclusions-about-your-medications isn’t in a position to pressure you to alter your medication regimen. She is not your prescribing physician (and if she were a physician it would probably not be ethical for her to treat you anyway since you’re related).

    I did hear what you said about the fact that you follow doctors orders and never adjust anything yourself and that is wise. (I totally understand you didn’t change your meds without running it by your doctor).

    That said, you indicated that the words said to you (that you found so hurtful) have influenced how you’re taking your medication. In other words, you may have gotten a doctor to give you the go-ahead to change your medication but it sounds like (maybe?) this woman who hurt you is a good part of why that came to pass. (I’m not sure if you asked your doctor about altering your dose after the relative you mentioned made her comments or what).

    It’s not crazy at all to feel so hurt by someone’s remarks and so tired of being judged. I understand that this led to your decision to take steps to change your medication/dosages (with your doctor’s OK).

    It sounds like, from what you said, that reducing your medications has triggered a worsening of your symptoms. Does your doctor know this?

    My concern is that you have observed a worsening of symptoms and it sounds like you have linked it to the medication change. So, if your doctor isn’t aware of it, I think it’s important to inform him/her ASAP. I don’t mean to sound preachy in any way, shape or form. I am just truly concerned because it sounds to me like this woman’s judgment of you (and hurtful comments) have triggered a chain reaction (like proceeding to alter your meds) that has you worse off than you were before.

    In my opinion, you have to work with your health care professional(s) – and, no, I don’t mean the nurse you mentioned – to determine the best treatment plan for you. No alteration of your medication schedule is going to stop people like the woman you mentioned from judging, in my opinion. Anyone who would judge you in the first place is unlikely to suddenly stop simply because you’ve started taking less meds. On the contrary, if your symptoms have worsened from the med change, you may even (sadly) be subjected to more judgment. As you probably already know, increased depression symptoms can exacerbate your chronic pain and vice-versa. So, a vicious circle can result.

    Best of luck to you and I hope you can feel an improvement in your symptoms as soon as possible!

    Jeanne

    P.S. I found the book The Truth About Chronic Pain by Arthur Rosenfeld very interesting. Given the topics you’ve mentioned, I think you might really find it interesting. It’s an excellent book. Even if you don’t have the time or patience to read it from cover to cover, it would be worth skimming. Chronic pain management is covered but there is also lots about this whole notion of people judging other people for things like (gasp!) taking an appropriate amount of pain medication. (Often, chronic pain is under-treated. You’d never know that to look at how pain management is handled). It’s a really interesting book.

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