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Chronic Snarkopolist: Blaming the Patient

Post Published: 20 July 2011
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Category: Chronic Autoimmune Conditions, Chronic Snarkopolist, Column
This post currently has 14 responses. Leave a comment

Hello my loves!

The first time someone made me “wrong” for my health or how I felt I was only seven years old and was developing RA and lupus in my joints. I was in pain and I didn’t know why. The orthopedist who looked at my brother’s injured knee also looked at my feet (I ached in every joint but my ankles and feet felt the worst at the time). He said to my mother, “Perhaps she can lose weight.” At the time I was not a fat child and was very active. It was not a solution and I remember learning only, “If I complain someone will tell me I am fat.”

I relearned this lesson in my adulthood after being injected with enormous amounts of cortisone and gaining weight. My physician at the time said to me, “Your pain will go away if you lose weight, you should join weight watchers.” Again, at the time, I went from having no pain to being in significant pain, and my weight was increasing only because of medicines and not because I was shoving food in my body.

At the time a friend had undergone significant medical procedures and lost 40 pounds. Her doctors were concerned about her loss. Her back hurt. Rather than blame her weight, they actually had to blame something else, like her mental state. They sent her to therapy. She was also in pain, and when she got help for chronic pain she went on to have a very productive life.

It was during this time I realized that medical interventions themselves are labeled to make the patient wrong. If someone doesn’t do well on chemo, the doctor is taught to will write, “Patient failed treatment.” instead of “current treatment not suitable for this patient.” They say, “Patient denies using cigarettes.” Instead of “This patient is not a smoker.” The very language is one of denial, one of failure, one of being wrong. It is probably because doctors have forgotten they are supposed to practice half an art and half a science and have started using a language that is cold and not personal and they have sometimes even called patients a bed number or a disease. Hopefully we can get this to change if we continue to discuss it out loud.

As I learned more about being a patient and watched people being both successful and unsuccessful, I realized why it is so hard to be a “chronically ill” patient through a lifetime. It is hard to even be a short-term patient. I have listened to doctors talk about how difficult it is to know so much and not trust they or their family members will be getting the proper treatment. Even doctors and their family members get sick. No one wants to be a number or a disease. We need connection and realness and relationship in medicine.

One friend, who is also a physician, told me, “The most difficult part of being an educated patient is actually knowing what can go wrong. If you don’t know you just trust things will right. And if they don’t, you never know and so you don’t realize you were failed.” In some ways, ignorance can be bliss. When we begin to understand that we can be blamed for our treatments that are not going well OR our own bodies turning against us, OR even being empowered and asking for better answers, we can feel overwhelmed. We can also get better treatment and much better results. It is worth it, but it is a much longer haul than sticking our head in the sand and pretending and not knowing. A life of awareness and focusing on what is going on takes TIME. It takes effort and connecting and building relationship with ourselves and with our doctors.

It isn’t only medical words that label people as wrong. I have had friends tell me, “I would rather die than inject myself with needles every day.” Or, “I would die before I would take chemo.” And I have not always had a good answer to that. Sometimes I stay silent. Other times I say, “Ahh- an interesting choice – one we all get to make.” It always feels like such a slap in the face to those of us who make the choice to be alive and live WELL. Other times it feels like they are telling me I am wrong to choose medical interventions over death and that I should give up. Perhaps it is their fear, but it hard not to take it personally each time I hear it. And each time I hear those blaming words, it takes work to have those conversations, and I only have them with friends I care about, never strangers.

When we don’t feel good all this effort with doctors and friends (and our family and our romantic partners) is WORK. And work is harder for us when every job is asking us to do more. We are not wrong. I want to recognize that now. No one is wrong for our health. No one is wrong for what we were born with or what happened along the way. If we have done things to create ill health, we can do things now to set them right. And even if we have engaged in behaviors to create bad health, our doctors need to be willing to work with us, help us find therapy and specialists to create better patterns and health. Blaming does not work. Being wrong is not a healthy place to live.

What do you think? What are the best strategies for dealing with your doctors and healthcare providers? Have you ever been made “wrong” for your health? Has anyone ever made you or your decisions feel “right?” Which one works better for you? Which one makes you feel more directed and more alive? Please tell me! I need to know!

I will see you same time next week! Kiss kiss!
-Melissa

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14 Responses to “Chronic Snarkopolist: Blaming the Patient”

  1. Graves Situation says:

    “Which one works better for you? Which one makes you feel more directed and more alive?” I’m curious to see if anyone prefers being told they are wrong, a failure, and to blame for their health problems. On the other hand, so many doctors engage in the blame game, maybe it does work. It certainly gets me out of their practices, which may be the goal.

    I have just had to deal with this one. Had what was supposed to be a VERY minor surgery on my hand. It didn’t heal well, I’ve lost a lot of range of motion, and after about two months had developed severe fibrosis in my palm. My ex-surgeon told me: I hadn’t used my hand enough (I work with my hands, dumbo); I hadn’t worked hard enough in physical therapy; the physical therapists had screwed up and not done right by me; and that I ought to see a rheumatologist (hand therapist’s suggestion)”because you have a lot wrong with you” but that a rheumatologist wouldn’t have any help for my hand.

    I think the real problem is that this guy is perfect, and his patients just don’t get bad outcomes. If someone does, it’s their own stupid fault. Unfortunately for him, I’m smart enough to know that my perceived laziness, a diagnosis with which my hand therapist vociferously disagrees, does not cause huge, honking nodules to cripple my hand.

    How does this make me feel? Sorry for the poor bastard. He knows better.

    • Melissa Travis says:

      Dear Graves Situation –
      Thank you so much for sharing your story here. How many we have – from the highs to the lows.

      Your insight and your voice is so necessary.

      Keep writing, keep finding your path. And please – keep sharing!!
      xo
      Melissa

  2. Amy says:

    I have been one to say “I would rather die than…” but then I go and do it anyway. I have drawn this line aloud and in my head more times than I can count. It is usually what happens right before I do said thing. I’ve never thought of how this affects anyone around me as I only say it to my closest of friends. but some of my closest of friends are doing those very things I am swearing I won’t- yet I end up doing.

    Anyway, I hate this blame game. As an RN I am definitely guilty of calling a patient by a room number A LOT. I am not proud of it but my memory sucks.

    Your friend is right about knowing more can be scarier than not. When last year I entered the land of getting some of the same drugs IV that I used to give as an oncology RN, I realized how scary that was. Surgery doesn’t scare me because I have never been a surgical nurse. Chemo or biotherapy drugs; different story. I know those backwards and forwards. It’s scary. But I take them.

    And last but most important, the blaming thing, especially related to weight… I am SO there with you. You know that. I have had massive amounts of prednisone over the last year or two. I have gained massive amounts of weight. I am a diabetic now. The diabetes was blamed on my weight, not what caused my weight. Every physician I see except one blames my weight initiallly. The only one that doesn’t is the one who first knew me as a long-distance runner who was thin and active and he prescribed massive amounts of prednisone and watched me gain 200lbs. He doesn’t say anything about my weight. But he is the only one. I’m personally sick of being blamed and I do stay away from new dr’s because of the blaming dialogue that goes on. I hope the entire medical community can become less judgmental and when I return to work one day I am going to really put in an effort to not call patients by room numbers just because it’s quicker mentally. Good article, Melissa. Love, Amy

    • Melissa Travis says:

      Dearest Amy,
      Thank you so much for writing in. Your insight and reminders and stories matter so much. How different it is to be a healer and a patient. We are our own best advocates. I’m glad you have one doctor who gets it. And I’m so so hoping you find the healers who help make a relationship with you and help you sort this.

      Thank you for sharing your story. Please keep writing and sharing. All the highs and lows -all the victories and pain. This is our process. You are so amazing and beautiful.
      xo
      Melissa

  3. Shruti says:

    I got so riled up about this one, I had to write a whole blog post in support/response!

    http://gradstudentwithlupus.wordpress.com/2011/07/21/the-ill-and-the-blameless/

    • Melissa Travis says:

      Wow- what a beautiful, passionate, and powerful response!

      Thank you so much for your comment and for your blog post! I’m so glad we are all in this together. I’m so glad we are all here sharing and healing together! Keep writing! Keep sharing. We need each other!
      xo
      Melissa

  4. “It was during this time I realized that medical interventions themselves are labeled to make the patient wrong.”
    Totally true and thus totally and utterly heartbreaking — for millions of us. This is wrong. How does it change?

    • Melissa Travis says:

      Dear Allison,
      What a good question. It is ours to embrace. I believe the change starts with a relationship between us and our doctors – and trusting ourselves. It starts with these conversations. And – mostly- our willingness to move beyond the bitterness and into a sense of healing and health. We cannot truly start to heal when we are angry and fearful – though THAT IS PART OF IT. It is part of all our illness stories. But if we are clinging to it without being willing to share it, heal from it, and be truly willing to keep on together, I believe we will always stay mired in it, angry, fearful, bitter, and in resentful mistrustful relationships with our doctors… and that is not at all a healing place.

      I have found many good doctors by being open and willing to see them as my advocates and on my side. And I have been willing to walk way from bad ones. And – I am here sharing stories and ideas and pouring out fear and pain and joy and hope with people on my side – and hearing theirs. It is my belief that advocacy and relationship and trust and holding all parties (doctors, nurses, and pharmaceuticals, etc) to a higher standard will ultimately be in our best interest. And this is our job – to do the work too – reach out and reach back.

      Change is here. It starts with us.
      What do you think?
      x
      Melissa

  5. Sarah Horn says:

    I learned early on to not take a doctors word as gospel. When I was having infertility issues I did all kinds of research and dx myself with what was wrong. My doctor thought I was nuts, but did the test anyway–I was right. I now have 3 amazing sons.

    When I have to see a new doctor, I start off by telling them this: “We are all human, and we all make mistakes. You have hundreds of patients, I have one. You are indeed the doctor, but I will be doing my own research and if I think you are not doing something in my best interest, I will question it. Think of me as your check and balance system.”

    My father died due to doctor incompetence. I will never take a doctor at his word.

    • Melissa Travis says:

      Dear Sarah,

      Thank you so much for writing in! I am so sorry to hear about your father, but so happy to know that you have three children and success as well! Thank you for sharing your positive results and actions with your doctors and how you talk to them and relate to them! This matters! This is how it is done!

      It is important to have a good working relationship and work as a team with doctors who are comfortable with us. There are many ways and many relationships and many types of doctors and personalities. I’m glad you’ve found a good fit! And – I’m glad you’ve found a way to trust yourself and share it here!
      xo
      Melissa

      • Sarah Horn says:

        Thanks Melissa,
        I do indeed have a great relationship with my doctor. Because of that, I have found a medication treatment that works for me, and I am working on getting off my anti-depressants. My children were robbed of their mother the first few years of their lives, but I am here now, and now is what matters. They know all about my thyroid, and can probably give a lecture in how the thyroid works if asked! LOL

  6. Michelle says:

    Ah! The blame game! My son is going to be 13-years-old and I was only diagnosed with Autoimmune Graves Disease (Hyperthyroidism) in September 2009. So for 11-years of his life I heard the blames over and over again. Including and probably my favorite, “Its all in your head!” I knew that I wasn’t supposed to feel the way I did. I was exhausted, moody, experience constant stomach issues – over the 11-years of ‘its all in your head’ it gradually got worse. My irritability became so bad I couldn’t stand to be around myself – let alone others around me, I had developed trimmers, I couldn’t focus and began to forget things that I never would have before, I literally sweat puddles where ever I sat in the middle of winter, my heart would race constantly, my appetite increased to where I was eating constantly (no weight gain), my muscles began to seize (and I mean every muscle in my body), I began to have issues with my vision (double vision and spots follow by extreme headaches), fertility issues, nauseated and dizzy constantly, and slowly my airway was cut off by the giant goiter that had formed in a lovely ‘plump butterfly shape’ (lol). After I developed all of this over 11-years and had seen every specialist known to man (including an endocrinologist) I was told it was ‘in my head’ – I finally got a doctor to listen to me and was sent to yet another endo who finally said, “This isn’t in your head, you have Graves Disease and your thyroid levels are through the roof!”

    I too am one of those that has been guilty of saying, “I’d rather die…” My went something like this, “I’d rather die than to continue living day in and day out feeling like this. My son deserves a better mother!” I had hit the bottom of depression – I was thankful that I found an endo that ‘figured it out’ – yet I continue to have increased joint and muscle issues and was told it wasn’t related to my disease. Even though my research showed it is very much related. In the mean time I took my issue to my family physician as I was appearing to get no where. I went to her to have my blood pressure meds changed – we spoke of the joint pain. I was literally told to sign up for a spin class and get off the couch – that was her solution to absolutely everything – high blood pressure, depression, anxiety, muscle/joint pain. She even went to the extent of telling me she wasn’t changing my anxiety meds she had recently changed me to, even though my insurance didn’t cover it. I left in tears, so frustrated, so defeated!

    Since I have went back to my endo – It has taken me time, but I have been able to get my endo to listen. Through the many wonderful articles and supportive people and experts of ‘Dear Thyroid’ I was able to discuss the possibility that my thyroid meds weren’t working. They changed me from Synthroid to Teretant it has been different as night and day. I still have issues, however I finally feel like I can function. I feel I am in a good place with my endo right now…I know that it will be a ‘work in progress’ as I know I have to keep her on her toes. Whether she likes it or not!

  7. Debra says:

    I’m about a year behind the curve in finding this post but I LOVE it! Since high school I have had intermittent and very severe pain in my wrists and elbows and ankles…every single time I went in for exams or x-rays or ct scans or nerve function tests, every time I complained of pain or swelling or fatigue, I ended up being told, “Everything’s fine, you’re just too fat. Fat people have a lot of trouble with their joints. You really need to lose weight, you know?”

    So I sucked it up and suffered in silence until this past summer when finally, the pain had spread to ALL my joints and I was almost completely disabled. I ended up in a rheumatologist’s office being told “You have rheumatoid arthitis and lupus and probably have for YEARS.”

    At this point I just have to forge ahead with treatment and try to get better, but I am so angry that my nearly twenty years of pain and swelling and fatigue and debilitation got dismissed by doctors. I wish there was a magic wand we could wave to get them actually listening to patients and not dismissing them because we don’t all fit in perfect, tidy little boxes.

    Thanks for writing, I’m bookmarking your site so I can come back and read more 🙂

    Debra

  8. Janet Dilbeck says:

    I would love to see this blog post and comments continue to be active. I just read about it in another support forum and I know (from experience) that being ‘denied’, ‘ignored’ or not understood is almost one of the worst outcomes of a chronic illness. There was even one poster, after I submitted something like this (Spoon Theory?) say it made ‘us’ look like whiny children!

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