How to Be Your Own Medical Advocate

By Lisa Mark, C.P.O.

In 1996, I had an illness that nearly killed me. I was exhausted, felt awful, could barely stand up, and had trouble remembering things. Yet I somehow had to find the energy not only to take care of my newborn and 5-year-old, coordinate our upcoming move, consult with doctors and other medical providers on my condition and treatment, and receive treatments that might or might not help me regain my health, but also track our quite substantial medical bills in order to forestall what would have been economic ruin for us.

At the time, most of our medical providers did not file insurance claims, so that task fell to me. One of my clearest memories is sitting on the floor of our home office, surrounded by piles of medical claims that needed to be reconciled. I remember the babysitter coming into the room to ask me a question; when she saw the piles of paper surrounding me, she turned around and walked out of the room without saying a word. She later told me that she’d been shocked that a person in my condition would have to deal with paperwork.

Reconciling those claims was a daunting task for anyone, but especially for a person with a critical illness and little energy. And yet, as with most things in my life, it turned out to be a great learning experience. Below are the guidelines I took away from this process. These apply not just to filing insurance claims, but to any area of life that requires an investment of time, energy or resources in order to facilitate a specific outcome.

  1. Decide if the return on investment is worth it. Is the outcome worth your time and energy? If not, consider delaying or deleting completely. If so, be strategic in how you go about following up.
  2. Document everything. When communicating with insurers, providers, attorneys, and other professionals, note the date, time, name and outcome of each conversation.
  3. Track the resolution of each communication. What did the person you spoke to say they would do? Did they do it, or are they in the process of doing it?
  4. Use a calendar to notate a follow up date and action, and continue to do this as needed so you remember to track things as they are completed.
  5. Follow up as needed until you gain the result you want, or until it becomes clear that you will not attain the result you were hoping for.
  6. Be organized. It is still surprising to me after all these years that when we call our insurance company they remember us. I believe this is less because there are good people on the other end of the phone and more because they know, from our past interactions, that we are super organized and track (and pursue) things as needed.
  7. If you aren’t getting the results you want, consider hiring an attorney. Sometimes all it takes is a call from a legal professional to show you are serious. Hiring an attorney gives credibility to your claim.
  8. Learn from each experience. What will you do differently next time? What worked and what didn’t? How can things be streamlined in the future?

Have you ever had to advocate for yourself with regard to an illness? We would love to hear your story.

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5 thoughts on “How to Be Your Own Medical Advocate

  1. juliebestry says:

    Excellent advice. The sad truth is that the more complex one’s health problems, the more adept one is likely to become at figuring out the nuances of the health system. Thankfully most doctors’ offices do file (at least primary) insurance, but I hate that you went through that. I hope people read your guidance before they actually need it.

    Liked by 1 person

  2. Kim says:

    I lived and worked in the Washington DC area and was an avid wildlife photographer when ever I could get away. Usually most weekends. Getting up at 3:00Am to drive two and a half hours for sunrise. I am a type A person and work issues until they are resolved. I am very persistent yet that was not enough.

    Starting in the end of 2010 I started to feel tired. Spring 2011 I made a appointment with my Doctor. I had been going to this practice of physicians for more than a decade. I was not a ‘new’ patient. The result of that visit was a blood draw to check my vitamin D levels. Sure enough the Vit D level was low. I proceeded to take the therapeutic level for 6 weeks and then the recommended dose to maintain.

    I continued to feel tired and eventually went to a different Doctor explaining – I did not feel like i was being heard. She tested for everything… No disease detected and Vit D level low but in range.

    From there I tried another Doctor- Vit D was low so I upped my dosage. I tired Vit B12 injections – smallish improvement. Possibly mental but still.

    I was 51 years old when this started or at least when i first noticed I was more tire than usual. I tried again and again to get anyone to hear me. I felt like I got the there, there middle-aged woman everyone here is tired – pat on the head.

    Many many missed opportunities along the way to take things one step further. In my health record it clearly states my father died from complications of multiple Myeloma. I was suffering from exhaustion. I no longer could do my much loved hobby – photography. I had a lymph node pop out, extreme shoulder pain (lesions) told probably “Rotator cuff”.

    In May of 2014, 35 days out from my wedding, I had a pinched nerve in my neck wake me in the middle of the night with pain shooting down my left arm. Finally an MRI revealed suspicions of lymphoma and confirmed the pinched nerve.

    Final diagnoses stage 4, high grade very aggressive Follicular lymphoma with B cell (transforming). It took me – 3 – years to get a proper diagnoses. By the time I was diagnosed I was very ill.

    I got married and started R-CHOP chemo therapy. I am happy to report that I am now officially 3 years in remission.

    My point is even the most vocal and persistent often are not able to punch through the wall. I am VERY, VERY vocal now. I hope it makes a difference moving forward.

    Liked by 1 person

    • Lisa Mark says:

      Hi Kim, Thank you for commenting. Please know that you are not alone — this is a common issue with the medical profession, and certainly being female and ‘middle-aged’ doesn’t help. Just this week I read of a pediatrician in my area who ignored parents’ concerns about their child’s head size and repeatedly told the parents the child was ‘fine’ when there was in fact a huge issue that could have led to the death of the child had the parents not sought a second opinion.

      Having to be vocal and advocate on our own behalf is difficult at best and especially so when we or our loved ones don’t feel well. We want to put our energy towards healing but find that we have to put it towards advocacy instead. I’m not sure what the answer is, but our hope is that Illness Warriors can start to change people’s perceptions of care and their own control over it.

      Thank you again for commenting. I wish you continued health and much happiness, and I am glad you are okay.

      Like

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