Why I Generally Don't Like Doctors
I was invited to be part of a panel presentation at the recent Consortium for MS Centers annual meeting. This sponsored panel, Achieving New Treatment Goals in Multiple Sclerosis: Strategies for Initial Treatment Selection and Patient Engagement, included recommendations on treatment strategies and shared decision making. Alina Ahsan, Health Union’s MultipleSclerosis.net community manager, and I presented information on how our community members view decision making and interact with their providers and each other. Following is the text of the part of the talk I gave at 7:00 AM – I hope you appreciate the message and are heartened like me that it appeared to be well received.
Good morning. I was officially diagnosed with MS ten years ago but most likely pushed through symptoms and ignored signs that something was wrong for an additional decade or more.
I must begin by giving my own personal full disclosure – you are perfectly nice people, but I generally don’t like doctors.
What the medical field represents
On many levels what the medical field represents to the person with MS is a reality that we would prefer to avoid.
Doctors take up our time and make us operate on your schedule – especially these 7 AM presentations.
Doctors take our money and other resources.
And Doctors are a tangible reminder that there is something wrong with us.
It’s hard to switch off the mindset of centuries that doctors are healers of the infirm and flip our thinking that our physicians can help us focus on wellness and living our best lives. Tip and tricks for better living with MS aren’t viewed as something in your armamentarium – we view your chest as being full of drugs and tests. Those are all good and well and necessary.
We need more
But we want and need more to deal with living with a chronic disease. We need compassion and reassurance that what we are experiencing is something others have also faced and survived.
When a person meets you in the exam room and hears their diagnosis for the first time, it is news that is difficult to absorb even if it is anticipated. You know this all too well from your own patients. You’ve seen tears, denial, or even the deer in the headlights blank stare, and as hard as you try to give the person time with you, there is always that next patient waiting to be seen. We know your time is limited and valuable – after all we also have waited to see you.
The classic diagnosis scenario
All too often I hear the diagnosis scenario plays out like this – The neurologist says -
“You have MS”
“Here’s some options for treatment for you to consider,” and then hands the person a stack of glossy brochures full of words and concepts we haven’t a clue about.
We’re then told – “Come back in a week or two and we’ll discuss the next steps with your treatment.”
AND then the diagnosis appointment concludes with
“Whatever you do, don’t look at the internet and don’t consult Dr. Google”
Looking for answers online
Now do you really expect us to leave with all of our unanswered questions and not look for answers online?
Fat chance, unless you have the very obedient, compliant patient of 30 years ago. If someone else has driven us to the appointment, we may already be researching MS on our smart phones in the car on the ride home.
We leave the doctor’s office wondering what can we do; what will make a difference for us and our MS. And it is only natural that people search out support and information in places other than their health care provider’s office.
A quality online community
A quality online patient community offers support, compassion, and someone to listen and acknowledge our doubts and fears, 24/7 and all at no charge on our own time schedule.
Increasingly, online sites also include life style support and coping skills to face the daily challenges of MS.
Unless your practice is in an exceptional MS center that offers programming, counseling, exercise and diet counseling, social work and much more, the entire package of wellness services we need can’t be accessed by a visit to our doctor.
See the value of online communities
Rather than seeing online MS communities as a competitor that undermines patient care, I encourage you to research sites such as what has been developed at MultipleSclerosis.net and embrace their value.
I normally don’t encourage troll behavior, but if you don’t know what is available online, the best way to learn is to lurk in the shadows. You may be surprised how these communities function, the depth and breadth of knowledge content, and the self-monitoring of incorrect information. The National MS Society, CMSC’s venture with the MS Nurses, and Health Union’s MS site are great places to begin. The content in MultipleSclerosis.net is vetted by medical authorities and patient conversations are monitored and strict rules of community engagement are enforced.
Knowledge is power
Online communities are a wellness tool that doctors and nurses can’t provide on their own.
As our providers, I encourage you to dispense more than drugs and medical advice. Compile and share a list of resources for your patients to give guided direction to find appropriate online support, a key to living well with MS.
When you become guides for our journey with MS, empowering us with the tools to find ways to coexist with this chronic disease and not just our doctors, we may even view you as a partner in our care.
And who knows, I may have to change my disclosure to say I really like doctors.
How well do people around you understand MS?