"Suffering the Slings and Arrows of Outrageous Fortune"

 

In my post, Diamox Pointers, I refer to using the ‘Assertive Method’ to help you get the treatment you want to try but didn’t give much information at all about it – just a vague, unhelpful reference. I have seen this method mentioned in a conversation on Inspire (the EDNF message board) and, unfortunately, still cannot find the original post I saw it in. But, now, a couple years after I wrote the post about Diamox, I have decided to try and clarify what I was referring to. I have received several emails recently from folks who are desperately trying to find a doctor who will let them try Diamox, so I feel this is a timely post – if more than 2 years late!

The Assertive Method is effective in many situations but is well suited for use by chronic illness patients when interacting with doctors. It gives the patient a way to get what is wanted or needed without resorting to methods that may be overly emotional or combative and which would be viewed negatively. Certainly, it is not a foolproof method- there are some situations that there are no easy answers. But, it can be very effective in the kinds of situations patients find themselves in and empowering for a person struggling to be heard.

The Assertive Method

This method consists of four statements, delivered in one concise sentence each:

  1. This is the situation
  2. This is how I feel about it
  3. This is what I want you to do
  4. What do you think?

Once you have made your 4 statements, you say nothing until the other person finishes speaking.

Possible Outcomes and Your Responses:

  • If you get what you asked for, wonderful. Be polite and express your genuine appreciation.
  • If you get an acceptable alternative, show your willingness to cooperate and say “That seems reasonable, I’m willing to try it.”
  • If the result is unclear or you feel avoids your request, ask for further explanation and/or repeat steps 3 and 4.
  • If you don’t get your original request or an acceptable alternative say, “I understand, but [this is what I want you to do].” Do not argue, just restate steps 3 and 4 until you get the result you are asking for.
  • If you are offered an option that you must refuse, briefly say no and why: “No, I can’t/won’t do that because it will (hurt me, conflicts with other treatments/advice, etc.)”. If pressed, repeat your statement again, “I understand, but I can’t/won’t do that because it will (hurt me, conflicts with other treatments/advice, etc.)” And then restate steps 3 and 4 again.

Things to Consider

  • If it seems that the other person is unclear on steps  1 or 2, go ahead and restate them at any point you feel it necessary.
  • Sometimes silence is golden. If there is a pregnant pause or silence while the other person thinks, let it work for you and don’t be tempted to fill the void too soon. If there is a pregnant pause after YOU finish speaking, stand your ground and let it stretch out. Your objective is not to argue, but to make your 4 statements until you get a response. Your statements simply place the ball in the other person’s court, so to speak
  • If you feel you need to check that the other person understands your requests, ask something like, “Am I explaining myself?” or   “Am I being clear about the situation?”. I like to ask ‘Does that make sense?” in a genuine tone.  These kinds of statements are not as in-your-face  as asking “Do you understand?” or “Are you listening?”.
  • You can practice this ahead of time if you need to. You can role play with a friend or loved one until you feel comfortable – it could be helpful if they can throw out possible responses or even crazy ones, just to give you practice staying on script.  Or you can just rehearse mentally until you are confident you know the steps and can follow your script.
  • You can and should adapt this to the situation and your own personality. You can soften the script, to be less confrontational, as long as you remember that you are there to get results. You can be very straight shooting, to be more pointed, as long as you remember that you are not there to fight. Make it your own and be willing to shift to a question asking or discussion phase when appropriate.
  • Remember, what you ask for is key. If you want a doctor to consider letting you try Diamox, per the Driscoll Theory, you might make step 3 something like: “I want you to read  the Driscoll Theory (best if you have copies of articles or something to hand him) and consider prescribing Diamox, because I believe it could help me.” You don’t have to  (nor would it be wise) to say, “I want you to prescribe Diamox.” What you really want is for the doctor to get on board and consider your research, so phrase it accordingly.
  • This is not the only method or even the best method to use in all situations. Sometimes, you will want a sincere back and forth with your physician or, another time, you may need his specific advice on treatment. You do not need or want to always go in with an agenda. BUT, for situations like asking for a specific medication or treatment from a doctor who is reluctant or where you need to assess his willingness to listen to you, this can be an effective method.

Continue the 4 steps until you achieve a satisfactory outcome or until you see no point in continuing the conversation. The point is to a) be very specific in communicating your needs b) to communicate in such a way that does not burn bridges or cause offense and c) give you a script to use in difficult situations.

We all have found ourselves in situations that cause us to get so flustered or intimidated that we are at a loss for words. Considering how long we often have to wait to see a specialist and how important a visit to the doctor can be, this method may be a way for you to politely get your point across in a composed and assertive way, avoiding displays of emotion that undermine your goals or blanking completely, wasting the visit and going home dissatisfied.

If you use this, let me know how it goes – for good or ill!

 

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Comments on: "The Assertive Method" (6)

  1. Eye doctors may be able to help, too. We will get this in a peer-reviewed journal, but until then, this high intracranial pressure can be likened to “pseudotumor cerebri” (usually treated with Diamox). What we’ve found, is that many patients often need Diamox for a while, but not forever. Awesome (and typical of pseudotumor cerebri). We are starting a list of doctors who can help — fortunately, this potential treatment is catching on. Meanwhile, should you get ‘stuck’, the doctors at Total Eye Care (TotalEyeCare.com) can evaluate you and provide you with a letter for your doctors, explaining why a trial with Diamox may be warranted. 😉

    • Now, Dr. D, when you say ‘eye doctors may be able to help’, you mean GOOD eye doctors like you and your husband! NOT the horrible eye doctor who yelled at me for having Em on Diamox and told me I should let her have a fusion because it is a pretty minor surgery. Remember? The one who ALMOST became a neurologist, so I should listen to him, even though he knew nothing about EDS. Oh, that guy makes me SO mad just remembering! 😡 I am so thankful for good doctors like you and your husband!

      Seriously, this issue of people needing Diamox and doctors ignoring them is so hard – it just breaks my heart. Remember when I predicted that the Driscoll Theory would become a standard treatment protocol for EDSers in 5 years? I still absolutely believe that – we are slowly getting there! But, that is cold comfort to those who can’t try Diamox now. I am so glad you commented and that Total Eye Care can maybe help folks in that situation! You and your wonderful husband rock! 🙂 I feel hypocritical saying this since my kid has Diamox and it helps, but people just need to hang on – we are making progress but huge changes take time.

      Thanks for commenting!

  2. I am sorry but as true and tested as this method may be, it would not succeed unless Diamox is clearly indicated in my book and in the book of other good physicians.

    • First, I am not at all sure it is a tried and true method for anything, much less convincing a reluctant doctor to allow an EDSer to try Diamox. This method was shared by another EDSer as a way to interact with a doctor who does not listen well and I posted about it because, as anyone who lives with a rare/ chronic condition will tell you, finding a good one is not easy. It could be a tool in the toolbox of a chronically ill person to manage their own care since that is what they are forced to do.

      Second, Diamox is a prescription medication which must be prescribed by a doctor: a doctor who is unconvinced that his patient needs Diamox obviously won’t be prescribing it.

      The real issue then is this: does the patient need it? Admittedly, the use of Diamox to treat the specific set if symptoms many EDSers face is a somewhat radical idea for the experts. It is somewhat counterintuitive.

      However, the evidence supporting this ‘radical’ treatment is living in my house. The Driscoll Theory saved my daughter. If it didn’t literally save her life, it certainly drastically improved her quality of life and prevented a drastic surgery that would have only worsened her condition. She is one of many who has been helped, yet many, many more suffer needlessly because no doctor will agree to trial of Diamox because they are too lazy or entrenched to consider anything but their own imperfect methodology.

      When ‘experts’ don’t listen to real, objective evidence, patients are left with trying to find one who will, simply to save their own life. There was a time when leeches were the cure for everything, germs and antibiotics were a crazy idea, electric shock was a viable treatment for hysterical women and lobotomies were the answer for anyone who was mentally ill. Enterprising people changed all of those things and not without much handwringing on the part of the establishment.

      Until doctors open their minds about this real alternative treatment, EDSers will be subjected to unnecessary surgeries that damage them irrevocably and line the pockets of the doctors who provide them.

      So, no, I don’t expect any doctor to simply go along because a patient tells him to. I do, however, expect doctors to do their damn job… which is to find answers for their patient.

      Thanks for commenting…I don’t mean to be hateful but this is a very tender subject for me. Forgive me if I was too harsh in my response.

      • Do not apologize for your honesty. I get it …There is data and science behind studies; however, now I realize manipulated studies set our standards.

        Your theory could very well be correct, but there are no (manipulated) studies. Research physicians, especially those at Harvard Medical School who do not practice clinical medicine–but rather supervise residents–set the standards. These standards define medicine, once presumed on a science until drug company funded research and partnerships with governement. I sound crazy.

        Community doctors base their practice on standards which are treatment protocols.. Deviation from those standards with adverse outcomes is grounds for malpractice.

        • Thanks! Like I said, this is a really tender spot for me and I probably should not reply about such things in the wee hours of the morning when I can’t sleep! 😉

          I get what you are saying about studies and agree – they are what make medicine roll along. They are a necessary evil. For the record, our EDS experts ignore the studies and data supporting this theory. We have real data backing us up and they ignore it while patients like my daughter suffer. Instead of being willing to try the least invasive treatment, they push the most invasive (and lucrative) treatment. Most of our experts, who we rely totally on, won’t even discuss this – so patients are forced to go against their advice and try it on their own.

          So, basically, we are forging a new trail for viable treatment options. We certainly aren’t the first condition to have to do so but it is not an easy place to be in. I am confident that the treatments in Dr. D’s theory will eventually become the standard of treatment. My daughter is one of the lucky ones: we found the theory before she had to have surgery and, as parents, we were confident in our ability to make good decisions about her treatments, we were relentless (yes, doctor shopping) in ensuring she had the opportunity to try the treatment, and she actually was able to try it and benefit hugely. It is hard to be in that position and hear the heartbreaking stories of people who want to know how we managed to try Diamox.

          I do get both sides, I really do. But, so much of the reluctance about Diamox has little to do with best practices and everything to do with politics. And that is not ok!

          Thanks again for commenting and tolerating me on my soap box! I really do appreciate your opinion and perspective. 🙂

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