When Doctors Don't Believe You

If the general public walks by me, they would not know that I have a disability unless I am using my cane that day.  However, some of my symptoms are measurable to doctors.  This is not true for many people who have chronic illness or chronic pain.  It is easy to give up advocating for your medical needs after numerous doctors have blown off your concerns. Once you give up advocating for your medical needs, you feel powerless, which only adds to the message your chronic symptoms already scream at you every day, "Don't you dare have dreams or goals for your life; you will never be able to cause the effects you want in your life."

So what does one do when given the message that they are a hypochondriac??? Believe it or not, the best thing to do is the exact opposite of what you think you should do.  Initially, patients with chronic pain or chronic illness keep advocating by going to different doctors, hoping they will find one who believes them.  Then when they don't find one, they stop going to the doctor altogether. 

1. Instead, keep going to the exact same primary doctor for years. Documentation is huge for eventually getting your needs met, and the more you go to the same doctor, the more documentation you have!  So do not be a super hero and tough it out all the time.  Your doctor needs to know how often your symptoms impair you. Eventually if you stay with a doctor, they will have enough documentation to "get it".
2. When you are at the doctor, be very clinical in your disclosure: "I am having the following symptoms at this frequency and intensity (mild to moderate intensity of pain throughout my back every morning for an hour or about 5 days a week for several hours a day".  Doctors like measurable data because insurance companies like measurable data.
3. Give the facts.  Trust your emotions with your loved ones or a counselor.  You deserve empathy, but unfortunately, you are more likely to be heard by your doctor if you are giving facts.
4. The World Health Organization, which creates the measures for symptoms, likes to see how symptoms impair functioning.  Insurance companies then use that data to create "best practices" for alleviating symptoms.  Do not be a  hero.  You are a hero every day.  Every day you push through symptoms in order to try to do some of the things you want to do.  Your doctor's appointment is the time to be honest about how your symptoms impair you so that there starts to be a documented paper trail. Try to state the impairments positively.  That is, state what you would like to see happen in your life that is not happening in the following areas.
   - Work:  Again, be specific.  "I would like to be able to work full time again. I would like to be able to work part time again, but after four hours, the pain makes it too hard to stay focused. While I am at work, I have had to use the following accommodations in order to do my job. I have missed x number of days of work the past six months due to symptoms.  I would like to reduce that to x number per six months".
   -Family: "My kids are frustrated that I cannot......".  "I would like to be able to have intercourse with my partner.  Right now these symptoms limit it to x times per year." These are measurable kinds of statements and are stated positively (focused on what you do want).
   -Social:  "I would like to be able to ride my bike again.  The last time I did, I had muscle cramps for three hours and could not sleep. I would like to get out with my friends, but the fatigue stops me."
   -Functioning Tasks of Daily Living:  These include personal care and household chores.  "I want to be able to shower without fear of falling.  I want to be able to grocery shop without severe pain. I want to be able to load the dishwasher without taking 3 breaks.  These are stated positively (the functioning you want back) and how your symptoms are currently limiting those tasks.
   
   When doctors hear that the reason you are seeking intervention medically is because you want more functioning, they are more likely to listen and to accommodate.  This may not be fair, but unfortunately, it is what is measurable, and it complies with insurance companies' expectations of the doctors. You deserve to be heard and to have empathy, but unfortunately, insurance companies do not measure a doctor's empathy.  They measure symptoms and impairment. Do not give up advocating for your needs.  Stay the course.   You will eventually get there.  Of course, do not stay with a provider who is sarcastic or demeaning, but eventually, you have to find a provider you are willing to keep whether they are empathic or not. You will eventually be heard if you stay the course, state the intensity and frequency of your symptoms, and positively state your wishes for how you would like your functioning to improve.
5. Continue with your primary for regular care, but ask to see a specialist once you have a diagnosis. Specialists are more likely to have knowledge of rare diseases and disorders and hence more likely to believe you.  Since they are specialized, they have more experience with how those symptoms impair functioning, so they also tend to be more empathic about these symptoms than primary doctors.
   
   It is really hard to wait for months and sometimes years of documentation when  you are finding yourself limited and wanting back the life you once had!  Stay the course.  Continue to document.  Continue to let your doctor(s) know how you are impaired and what your goals are. If you have had months of symptoms, and your doctor still is not listening, ask to see a specialist.