Advocating for yourself with complex, chronic illness PART 2 - Establishing a foundation for your healthcare

The first step in advocating for yourself is to establish a solid relationship with a primary care physician.  Internal Medicine physicians are specialists in adult healthcare so it is more beneficial to build your healthcare team with an Internal Medicine doctor as your co-pilot.  It is the responsibility of your primary care physician to coordinate your care with the input from doctors that specialize in other areas such as rheumatology, ophthalmology, gastroenterology, neurology, etc.  Doctors that specialize in body parts see patients as body parts and that isn't beneficial when trying to diagnose a complex illness that includes all your body parts.  Your primary care doctor should treat you with respect, listen to your concerns uninterrupted, and develop a plan of care that is focused on making an accurate diagnosis, providing you with treatment options, and working with you to find solutions to ongoing and new problems.  Your primary care doctor should be vigilant in monitoring you for a possible missed diagnosis.  There are many connective tissue diseases, autoimmune disorders, and neurological diseases that are very difficult to diagnose.  It can take years to make a definitive diagnosis.  These illnesses have similar symptoms to CFS and fibromyalgia.

Another critical component of developing a solid foundation for your care is an office staff that works well together, is responsive to what you need, such as a prescription refill, and doesn't serve as a barrier between you and your doctor.  I had a wonderful rheumatologist that was a partner in my care and we worked so well together.  But I always had great difficulty getting my prescriptions renewed due to the office staff not following through.  I attempted to work with this and I even talked with the doctor about the difficulty I was having.  One day I realized that I was running low on Ropinirol for RLS so my pharmacy faxed the office to get the refill okayed.  Two days later I attempted to pick up the prescription, but there had been no reply from the doctor's office.  So the pharmacy sent another request by fax, but when I returned to the pharmacy there was still no reply.  The pharmacy gave me extra Ropinirol to hold me over until they heard back from the doctor's office.  I called the doctor's office and the staff member told me I needed to be seen by the doctor before the medication could be refilled.  I attempted to explain why I needed the medication, but the staff member refused to give the doctor the message.  I made an appointment for the following week, which was the earliest appointment I could get.  I considered driving the 30 miles to the office to talk with the doctor since the staff were acting as a barrier, but the doctor wasn't in on Friday.  The pharmacy refused to give me any more medication until I saw the doctor.  I had to go without taking Ropinirol for 4 days.  By the fourth day I was unable to remain still for longer than 1 minute at a time and therefore I was up and moving for 27 hours straight before I could get to the doctor's office just to get a prescription filled.  The doctor was dismayed to find out that her staff had been a barrier in my care.  I made a decision to change doctors even though this doctor was a wonderful co-pilot.  If the office staff are a barrier it doesn't matter how good the doctor is.

An important concept for all of us to embrace is that we are healthcare consumers.  We hire doctors to give us an opinion -- essentially, they are our employees.  If the doctor's performance is poor we can fire them just as quickly as we hired them.  The doctor we choose to see is accountable to us and our expectations.  Take the time to sit down and write a list of expectations that you have for the doctor you hire to participate in your care.  When you see your doctor, present that list of expectations so that your doctor knows exactly what you want from him/her.  If your doctor doesn't meet those expectations, communicate that immediately to your doctor.  When you are disappointed in your doctor's performance let him or her know that.  Our power as healthcare consumers is the feedback we give our doctors and we share with one another.  I make sure I take the time to write a review of my doctor's performance on the various Web sites that provide customer feedback tools, such as Health Grades.  I check these Web sites out before I go to a new doctor.  For example, the reviews that were posted about the neurologist I have been referred to were not favorable so I discussed this with my primary doctor.  I told my primary doctor that I was not interested in seeing a doctor that has a bad attitude and I asked my primary doctor what his experience had been with other patients that he had referred to this neurologist.  It is important to have these conversations with doctors so they are reminded of our expectations.  Some people only write feedback when they are angry or when they are very happy, so take that into account when reading these reviews.  It is important for us to communicate a doctor's performance whether it is good, bad or indifferent.  Our ability to share our opinions with each other about the doctors we see ultimately improves the care that we receive.  I always inform the doctors I see that I read reviews about their performance on the Internet.

In preparation for an appointment with your doctor, make a list of concerns you want to discuss.  Doctors are busy and can only address 2 or 3 issues per visit.  Before your appointment review your list and select the most important issues you need to discuss.  You can always make your doctor aware of additional issues you have and then decide how to get those issue addressed, which may mean making another appointment.  If you go to your appointment prepared and organized you can accomplish a lot in a 15 minute appointment.  When the doctor walks into the exam room I communicate the number of concerns I have to the doctor and then I start with the most important concern.  I am aware of how much time I have and work through all my concerns within the time that is available.  It is difficult to address the many issues that patients have when a complex illness is involved.  If time runs out and there is another concern that you have, this can always be discussed with the doctor's nurse or nursing assistant and then they can get back to you with an answer.

When a doctor makes a rude statement to you, becomes annoyed when you want to talk about a new symptom or a persistent symptom, or oversimplifies your diagnosis, it is a sign that you have reached the end of that doctor's knowledge and it can be an exceedingly short trip!  A competent doctor that cares about patients has the ability to admit when he/she isn't sure about the diagnosis and avoids labeling or stereotyping a patient.  I have had a number of physicians write bogus comments in my medical record.  That's a lot of power!  Most recently I saw a neurologist for my peripheral neuropathy and he documented in my medical record that I'm "just depressed" and I have "skin sensations".  I am now in the process of challenging that doctor and having my medical record amended.  Remember that you own your medical record and you may request to review your medical record at any time.  If you do not agree with what is documented in your medical record you can challenge that documentation and request that the documentation be changed.  The content of your medical record has many implications for you both legally and medically.  This documentation is critical if you need to apply for disability and may have implications for a health or life insurance policy that you wish to purchase.  Your medical record is a legal document that follows you throughout your life and the tendency of anyone reading your medical record is to believe whatever a doctor writes.  Doctors have a great deal of power and that power is recklessly abused at times by doctors.  We must exercise the power we have as healthcare consumers and advocate for ourselves to ensure that our healthcare outcomes are favorable for us.

The next topic in this series that I will be discussing is how to speak the same language as your doctor and healthcare team.  Meanwhile, take good care and be well!  Many Easter blessings to you . . .

Advocating for yourself with complex, chronic illness PART 1

My 30-year career as an RN included a passion for patient advocacy.  People that are acutely or chronically ill are vulnerable and deserve to be treated with dignity and respect.  Vulnerable people need supportive and trustworthy people on their healthcare team, and the patient serves as the captain of that team.  My personal experience as a patient suffering from a complex and poorly understood illness hasn't always been a pleasant one with regards to my healthcare team.  I know that others have had similar experiences.

Any illness is a very personal experience that is unique to that person.  As a healthcare professional it is a privilege to be a part of that experience and to be a member of that person's healthcare team.  Unfortunately patients don't always feel as though they are the captain of their team.  In fact, many times patients feel more like outsiders and as though they are an annoyance when interacting with health professionals.  It is those times when we feel most isolated and alone, especially if we have been discounted and prescribed treatments that provide little symptomatic relief, but lots of side effects.  Feeling alone and unsupported emotionally at a time when we are so vulnerable is a difficult place to be.  That leads to a myriad of emotions including anger, depression, anxiety, fear, frustration and more.  We desperately need an advocate to help us navigate a complex and sometimes seemingly hostile healthcare system that will only continue to become more and more complex.  The complexity increases even more when the patient has a poorly understood illness that presents with a long list of confusing symptoms and reliable diagnostic tests don't exist.  On top of all that our family members and friends have difficulty understanding how desperately ill we are because "we don't look sick".  That only adds to our feelings of isolation.

There are advocacy groups in the Fibromyalgia and chronic illness communities, but those groups work in the background on our behalf and cannot be there for us when we need them most.  What we need is our own personal advocate to stand by our side when the going gets tough and to direct a healthcare team that may be apathetic at best.  So where is that advocate?  That advocate lies within each of us.  We must arm ourselves with knowledge of how the healthcare system works and how to find a medical provider that will serve as a co-captain in our diagnosis, treatment and care.  That's a tough charge when we feel so sick and are in so much pain, but as healthcare consumers we have a lot of power -- knowledge and camaraderie are power.

Symbols of who we once were

Over the years I have sorted through my belongings and made decisions about what I should keep and what I should move along.  I have always believed that if I no longer needed something that it's a good thing to let go of it and allow it to go to a new home.  There seems to be no good reason to keep something I no longer use.  But as I have gotten older and this chronic illness has taken its toll on my body it has become more and more difficult to let go of certain belongings.  This recent move to a home with less storage than my previous home has presented the dilemma of purging more belongings than I was prepared for.  I have come to realise there are things that I cling to despite the fact I haven't used them in 6 years.  Even the 5 year test seems to be a little long.  If I haven't used something in 5 years it's unlikely I will ever use it again.  So why on earth am I so reluctant to part with these things that have no obvious use?  I haven't used my cross country skis in 6 years and I'm living in a place where suitable snow is not generally available.  Due to my health status it is unlikely I will ever ski again.  That's a stark reality for me.  So do I just accept that reality, sell my skis and move on?

I have always been so rooted in reality and I learn life's lessons from my life experiences and then keep moving forward.  It just seems that spending too much time reminiscing leaves people stuck in the past, which prevents them from enjoying the present and creating new life memories.  But when the future may not hold new adventures and physical decline is the expectation, what provides that quality of life that keeps moving us forward?  If I let go of my skis is that a statement of defeat?  Those skis are symbols for me.  They symbolize a time when I was able to overcome this illness in an act of personal rebellion and rise beyond its limitations and feel normal again for at least a short time.  Of course I always paid the price for the level of activity and effort required while cross country skiing, but it kept me sane and grounded . . . and hopeful.  But this day is a new day for me and going cross country skiing is no longer an option for me.  To let go of a symbol of a more vigorous time creates a sense of grief.  But isn't that something we all experience if we are lucky enough