Monday 5 November 2012

Respect is a Two-Way Street: Day 5 NHBPM

Topic: Health Activist Soapbox (My poor old soapbox is battered from all its use. I may have to MacGyver it to keep it together at this point)

As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room. My team is large, with each doctor addressing one aspect of my presentation. But doctors who specialise in or offer comprehensive treatment for any form of Dysautonomia are, sadly, rare.

Most doctors will specialise in an area eg Neurology, but by and large patients with any form of Dysautonomia will form but a small part of their overall practice. In all fairness to the doctors, they must maintain a working knowledge of numerous disorders, but the depth of that knowledge is constrained by the very real factor of time. They may have a better knowledge of the disorders that they see more frequently, eg a Neurologist may specialise in Movement Disorders, but the majority of their patient load may be those with Parkinson's disease. Thus their knowledge will by circumstance, be greater in this one patient group. Conversely, when your diagnosis is complex the likelihood that any doctor you see will have a fantastic working knowledge of your condition or all the other aspects of your presentation, is not high. This is not an indictment on the capability of the doctor, just a simple fact of life.

However I, as the patient, have a limited range of medical issues which I need to focus on. I also have the impetus of wanting to be as informed as possible about my diagnosis and potential treatments. I am driven by a clear desire to improve my quality of life.

I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I'm taking and keep abreast of current research trials. On forums, I can ask questions of other patients. I can find out the real world experience of drugs and symptoms and where to buy the latest gadget that will help. Distance is no impediment to information these days and if a trial is happening in Ireland or Brazil I can find out with the click of a mouse. I can contact researchers directly and keep up to date with real time advances.

Many patients, like myself, have come from the health field. We know the drill, the practical workings of the medical system and how to weigh up all the available information (nearly a decade of mind-numbingly boring research methods and statistical analysis, still pays off). After over 6 years of living with Dysautonomia amongst other conditions (eg significant gastric issues, multiple allergies and intolerances, connective tissue issues,to name but a few), and finding few doctors who could help me, I have become through necessity, an expert on my diagnoses and my particular presentation.

Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship. This is not to negate my doctors own expertise which I value highly (as I said I have a good team now). Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.

Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.

The use of regular adhesive dressings and steri-strips left me with inflamed and infected incisions, one of which has yet to heal fully after three months. Only through luck was my allergy not so severe as to be life-threatening. However, with severe autonomic dysfunction and a non-existent immune system, my body did not react well to the added burden of the allergic response. My recovery which should have been measured in a couple of weeks is now measured in months. I now also have highly attractive scars on my stomach from one particular adhesive.
This was my arm after a hospital stay last year. 
Adhesives (paper tape in this case) and I just don't get on.

I have a list of similar experiences. I've had a radiologist refuse to believe me when I told him I have hypermobile hips and degenerative disc disease, and was in pain during the procedure. This lead to a popped disc and hip, and months of rehabilitation. A substitute GP refuse to believe I had the early stages of a chest infection and refused to read my file, listen to my history, or prescribe preventive antibiotics, leading to a worse infection and longer recovery period. I have also been prescribed drugs which lower blood pressure and increase heart rate despite the doctor in question being aware of my autonomic issues.

The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes. Yet there are many doctors and other health practitioners who appear uncomfortable with, or refuse to move to this model of health care. Instead holding tightly to the traditional paternalistic model of health care.

I know my body. I live with it, and all it's quirks, every day. I know how it reacts in certain situations. I have a team of great specialists who manage all my various and complicated health needs. I have multiple letters that layout all my medical quirks in detail. I haven't plucked my information out of thin air. I, like many patients, have both the quantified medically determined results, a good handle on the available research, plus a plethora of anecdotal information from my personal experiences, and that of a large, worldwide population of experiences. That knowledge is an important part of any treatment plan.

Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.

The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information. Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.

Why some doctors refuse to believe what their patients tell them baffles me. Whilst, a patient may not fully understand certain medical aspects, they are an expert on their own experience. Add in that many patients have medical backgrounds or are widely researched and such dismissal smacks of hubris. Information sharing must go both ways as patients are no longer content to be told what to do or think by their doctors. Just as patients no longer live in a bubble, so must doctors embrace the new technology of rapid information sharing and value what a patient tells them. Acknowledging that a patient knows more about their disorder is not weakness and should not be seen as a challenge to authority. Instead such knowledge should be seen as a positive tool to be used to facilitate better patient care. Conversely, a patient who feels listened to will be far more likely to respect and implement their doctor's recommendations, making their job much easier. Such mutual respect can only be a good thing for both parties.

Michelle :)

Earlier Instalments of NHBPM
Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.
Day III: I don't know about this, but I'd like to.
Day 4: A chronic handbag

R.E.S.P.E.C.T. sing it, Aretha!


  1. Once again, I feel as if I wrote this entry. Your arm looks like MY arms after hospital, procedures, or blood work!ive never met anyone else with this quirk! Do you think it's all part of the dysautonomia? Are you allergic to the IV catheters as well? I am. Within 4 hours, I start to get a pretty severe local reaction. I have to beg to get the nurses to change them. They usually don't.
    I can't say enough great things about your writing style - it's as if you channel ME. You've been a huge help to me since I discovered your blog - thanks again for sharing yourself with the world!

    1. I don't think it's necessarily a Dysautonomia issue. I see a lot of people with EDS have similar reactions and whilst I don't officially have an EDS diagnosis I do have 'connective tissue issues' which is about as close to a diagnosis as I've been able to get despite popping joints. I'm actually off to the dermatologist at my Allergy clinic to get testing done on it to see if they can clarify what is going on and, if possible, find some medical adhesives I can use. I don't think IV catheters are as much of a problem though as they usually tape them down it can be hard to tell where the rash starts and ends. They do get super itchy really quickly.

      Thanks so much for your kind words about the blog and my writing. It's always nice to hear when someone else can relate to it, not that I wish this on anyone else. :)

  2. I am curious if you have ever consulted with a functional medicine physician. Have you been tested for MTHFR gene variants that weaken your methylation pathway (ability to clear toxins)? Have you been screened for mercury, other heavy metals, chemicals, and dental materials biocompatibility? Have you consulted a biologic dentist? They can remove amalgam safely if you have high mercury levels and removal is medically indicated. Mercury and heavy metals can cause all kinds of problems. As can Lyme.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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