The Unwilling E-Patient: Learning to use my mother-of-a-patient voice

One of the essential enablers of participatory medicine is that the internet brings patients together with information and with each other. Sometimes those connections seem improbable, such as when an acute cancer patient finds much in common with patients who have a chronic condition such as rheumatoid arthritis.

Kelly Young, “Rheumatoid Arthritis Warrior,” blogs at RAWarrior.com and tweets as @RAWarrior. We bumped into each other on Twitter, and I quickly discovered that her community has much in common with the Cushing’s Disease and Cushing’s Syndrome communities I met through Robin Smith, @StaticNrg.

Here’s Kelly’s contribution to our I am an e-Patient series. Follow her odyssey, as she learned to understand her situation, think for herself when doctors’ answers failed her, and ultimately realized – unwillingly – that she would take responsibility for her condition … to become an engaged, empowered patient. And note how her “mother-of-a-patient voice” echos Diane Engelman’s mama lion story.

Parents as proxy e-patients

My dad was a United States Marine. When I was little, we were stationed in Twentynine Palms. One fine day, I pushed open the kitchen door and crawled out to explore desert wildlife: ants. When my mom picked me up a few minutes later, she was taking an ant-bitten baby to the hospital.

The multiple ant bites triggered a severe allergy to insect bites. I don’t remember the ant bites, but I remember the way my father reacted to my next encounter with insects. My leg swelled double its size after a bee sting a couple of years later. In the emergency room, they gave Benadryl to halt the allergic reaction to the sting. However, my dad’s reaction was just getting started. When they told him, “Just bring her back if she convulses,” he fought with the hospital for weeks for the right to have a small amount of Benadryl on hand in case the next insect encounter was more serious.

I can’t leave out my mom! A few years later, she paid out of pocket for allergy tests because the military doctors didn’t view allergy treatment as legitimate medicine. Then, she purchased the vials of serum that would eventually cure me of a potentially life threatening allergy to stinging insects. Finally, she appealed to the military hospital to at least have a nurse do the regular injections for me. Ironically, the nurse who injected my arms for 3 years was the same nurse practitioner who had helped deliver me when I was born. She was tickled to successfully treat me before she retired.

The d-patient (Denial)

I can’t stand being thought of as a person with a chronic illness. I never wanted to be sick. Or be guilty of so–called healthcare seeking behavior. I did everything I could do to avoid medicine and doctors and hospitals. Evidence: planning five home births; staying out of the hospital in spite of losing consciousness from encephalitis; waiting 24 hours to be treated for an 8 inch second degree burn; and spending 6 weeks in bed due to a torn lumbar disc with only four Aleve every 4 hours as treatment.

Having a chronic illness was such an appalling idea to me that I had once thought I would will it away like any respectable person ought to… When I was 15, my mother and I spent a year discovering every elevator in Bethesda Naval Medical Center and Walter Reed Army Hospital. It took that long to visit almost every department there and finally land in Endocrinology. The headache and heart palpitations turned out to be Hashimoto’s Autoimmune Thyroiditis. One tiny yellow pill every day for the rest of my life would fix that.

Within a few years, I was weary of pills and blood tests and convinced myself that I might not be sick any more. Exercise and a healthy diet would be enough for me. Becoming empowered in life decisions was a priority. Being a patient was not. Last year I wrote about the unhappy ending to that story that came after 10 years of no treatment. The internet was too young to help. But, my dad had access to medical abstracts and obtained a large stack of thyroid articles for me to study. I finally sought medical care as I ended up in a type of thyroid coma with a TSH (Wikipedia) of 478.

Recovering from denial, I was diligent with my thyroid care. This meant using the public healthcare system for a few years and then paying cash until my pre-existing condition was covered. It also meant surviving a dangerous week of thyroid storm that caused me to drop 10 pounds in a few days while eating almost hourly. When I insisted that I did indeed have thyroid disease, an HMO doctor finally prescribed beta blockers to get my heart rate under control as an emergency measure. In six months, I saw four endocrinologists until I found one who knew how to treat it.

A successful m-patient (Mom)

For some reason, I’m more comfortable being an m-patient. I did rely on exercise and healthy homemade food for my kids’ health, but I also made certain they had the best preventive care no matter what I had to do to get it. Through 21 years as a mother, there have been numerous instances when my engagement made a significant difference in the health and lives of my children.

When my son was 11 months old, I realized that he was deaf. I knew how to identify a deaf child because I have another deaf child. The pediatrician insulted me and tried to talk me out of seeing an audiologist. I’d been through that five years earlier with my daughter, so I had no trouble ignoring the pediatrician. Tiger is doing splendidly at 13 now with very powerful digital hearing aids.

I went through the exact same sequence with his older brother when it came to glasses. I went to a pediatric ophthalmologist anyway who told me my son had astigmatism and needed a plus 3.75 vision correction. He’s now 15 and he’s been wearing this same prescription since he was four. He was fitted with his first contacts today so that he could see better playing football.

It’s a miracle Bear is playing football. As an infant, he had a tumor which blocked about 98% of his airway. By the time it was removed when he was a year old, he had an enlarged heart and oxygen saturation levels in the 50’s. Why the long wait? During the first year of his life, I took my son to the doctor or the emergency room a couple of times a month. He had lots of symptoms including excessive nasal mucus, turning blue, and not gaining weight. I was warned by his doctors that Munchausen’s by proxy was suspected. I wrote more of the story here.

There are several more stories I could tell, but you get the idea. When you know that your child is in need or in danger, you don’t listen to any baloney at all. You only want answers or solutions and you don’t stop until you get them.

Finally an e-patient: an RA patient

Early in 2006, I was diagnosed with Rheumatoid Arthritis. I have written a detailed account of my long journey toward diagnosis. Long diagnosis stories are common with RA. My symptoms went back 27 years. (I told you I was good at denial.)

Childbirth is a common trigger for Rheumatoid Arthritis to worsen or become full blown. So is being 40. I got really lucky that year.

Since diagnosis, I’ve been on the most aggressive treatment possible. So far, my disease continues to progress and it’s a little worse each day. The symptoms have not remitted as I’ve failed to respond to treatment. They call that recalcitrant RA. It means I’m always in pain and every joint is always tender including my ribs and jaw. That means I often can’t talk or breathe or eat without pain. I’ve written more about what it’s like to live with RA in an attempt to increase awareness.

Living with chronic illness has been the most difficult thing in my life. There is pain. There is disability. There is a loss of respect from those who think of chronic illness as malingering. There is fear with each new chemo treatment. There are side effects of medications. But the hardest thing about being an RA patient is needing to be empowered with medical care when you’d rather flee.

It is difficult to find words to say how hard it is to make an appointment to see yet another doctor when you are once again told something that you know to be wrong. Over the last four and a half years, I’ve had more medical encounters than in all the rest of my life. Many of them have been characterized by 5 things:

  • Physical pain caused by overly rough handling
  • Lack of knowledge of the symptoms of the disease
  • Blatant doubting of symptoms
  • Lack of suggestions or solutions for improving my care
  • Lack of discussion of secondary diagnoses or preventive care (aka complications)

Much of my future is in my own hands. It is hard work to have RA. It is hard work to be an e-patient. And it’s so hard to continue to make appointments and be hopeful and smile and request what you need over and over. But I have no choice – I’m no longer a d-patient; I am an e-patient. I have plenty of practice being an m-patient, so I use my mother-of-a-patient voice and hope that fools them. Remember: “When you know that your child is in need or in danger, you don’t listen to any baloney at all. You only want answers or solutions and you don’t stop until you get them.” In other words, fake it ‘til you make it.

Kelly Young writes daily blogs on her website Rheumatoid Arthritis Warrior. She is more than her disease and her website is more than her own story. It is a growing community of empowered patients and a source of information about fighting RA and stories of other patients with autoimmune arthritis.


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Comments

31 Responses to “The Unwilling E-Patient: Learning to use my mother-of-a-patient voice”

  1. Ronda says:

    Kelly, thank you for sharing your story. Very well written and engaging. Kudo’s to your parents for doing the right thing, and you did the the same for your children. I’m sorry you have gone through so much and still do. I dearly hope that soon you will find the medicine that works for your RA.
    I am learning to be an E-patient, it is not easy, but it has made a world of difference in the quality of my care. I knew something was very wrong with me for two years. I sought answers from various health professionals, but did not find one. Last summer I finally built up the courage to be assertive in talking with my primary care doctor. He was convinced that I was the epitome of health and only had some osteoarthritis. I insisted on a referral to see a rheumatologist. He begrudgingly wrote me the referral and said “I can’t wait to tell you I told you so”.
    I was diagnosed with aggressive Rheumatoid arthritis immediately after blood tests and examination. I got to be the one to say “I told you so”, even though I would have liked it better the other way around. Needless to say, I found a new primary care doctor. I wonder how long it would have taken to get my diagnoses if I had continued to be a submissive non E-patient?
    Your list of five things characterizing medical encounters, unfortunately all ring true for me, and many others.

    • Kelly Young says:

      Thanks, Ronda.

      I’m glad you got your diagnosis so you could get treatment. And I’m glad you are taking time to share the story with others.

      I think it’s so important for us to share why we have become engaged. Maybe we can help a few other patients to be encouraged to fight for their health – whether it’s cancer or a chronic disease. And then mayyybe we can also help a few doctors to see where the missing links are that lets so many patients fall through the cracks.

      • Kelly,

        > I think it’s so important for us
        > to share why we have become engaged.

        Then I bet you’ll be intrigued with The Moment, an embryonic project of the Society for Participatory Medicine designed to do exactly that: “The Moment is when we grasp that it’s essential to take personal responsibility for our health and wellness.”

        More news about this will be coming shortly. It’s important to know that these don’t have to be professionally done – *participation* is more important than perfection. Think about what you would say, if you had a couple of moments to inspire someone to empower themselves.

  2. Annie Stith (@Gr8fulAnnie) says:

    Hey, Kelly!

    {{{gentle huggies}}} from one chronic pain e-patient to another.

    ‘Nuff said.

    Annie

  3. Susi Cox says:

    Thanks for story. It helped me a lot.

  4. Susannah Fox says:

    I’m catching up on my e-patient reading tonight and am just floored by this post. Thank you so much for sharing your story here, so we can all learn from it. I’m in awe.

    • Kelly Young says:

      Thank you very much for reading, Susannah. I’m so glad Dave gave me the opportunity. I believe I’m still learning the lessons myself. I found it helpful to process the journey more fully by writing it out.

  5. Shawna Murray MD says:

    Doctors often have personality disorders. They are poorly trained in an abusive system that often reinforces disrespect and abuse of patients. They are then asked to perform a lot of functions without error in that very same abusive system.

    You are right to become an informed patient warrior. Never go to a doctor’s office or a hospital alone. It is much more difficult to intimidate a patient with a witness in the room.

    No one is looking out for your safety or continuity of care. That’s your job…

    • Susi Cox says:

      Of course most of the doctor have personality disorders but this is not right always. There are many doctor who are very careful about their patient. If some one get right person then they must consult to doctor for better treatment.

    • Kelly Young says:

      Thank you for the encouragement, Shawna.

      Docs with personality disorders? I’ve actually seen more abusive behavior from doctors than I describe here so I know it’s true.

      However, calling the system abusive is a new, intriguing observation to me. As a “chronic” patient, I think that is accurate. We need to participate although we don’t always want to continue to interact with the disfunctional behavior of the system. The disease RA is so misunderstood that many “abusive” events occur as just a matter of course. There is confusion over what’s “medically necessary” for just “arthritis,” for example.

  6. Sue Woods says:

    The “e” in e-patients should mean “engaged”, and not necessarily using technology. So you’ve been engaged all along! Engaged doesn’t mean you do what health professionals say. It means you examine your situation and try to obtain information – even from your own experience, making your own decisions. Seems your parents were role models. thanks for the story.

    (Staying in bed for 6 weeks probably wasn’t a good idea, but plenty of doctors would have given you bad advice to do this!)

    Sue Woods, MD
    http://www.sharedheahdata.com

    • Kelly Young says:

      Thanks for reading, Sue. Yes, that is what I also thought about my parents. There were times we took matters into our hands even if it was awkward and difficult & clumsy. I’m grateful for them.

      By the way: I spent those weeks in bed unable to walk during what turned out to be the first trimester of my last pregnancy. I took enormous amounts of naproxen, but my son is healthy – Thank God. The pregnancy was a suprise. However, my refusing to pursue medical care (because I was afraid of surgery & narcotics & doctors doubting me) may have turned out for the best in that one case.

  7. […] you read my story on e-Patients.net this week, you know how much I hate to be a patient. I hate taking medicine and I hate people […]

  8. […] Like many with Rheumatoid Arthritis, back “problems” plague me – some car accidents and injuries add to the RA. For years, I lived with chronic pain not knowing the causes, being laid up for a few days or several weeks, neglecting to seek treatment. If you’re curious about my history of “denial” with medical problems, please see my full e-patient story on e-Patients.net. […]

  9. @stales says:

    kelly is an inspiration!! Thanks for sharing, Alicia

  10. […] This didn’t relate to the cause of the visit. I told him the joints all hurt, but he scoffed. I’m a veteran at that so, like I said, I’m fine. I’m actually smiling about how little it upset me this time. I know […]

  11. […] we connected with “Rheumatoid Arthritis Warrior” Kelly Young (see her great post here, Learning to use my mother-of-a-patient voice), which led to being found by Cynthia Lott Vogel, through Kelly’s […]

  12. […] closer to the truth is that many patients with chronic pain are unwilling patients like I was and often still am. I hope you’ll read that personal version of my story which I have […]

  13. […] it for me; so I had to learn to drag myself. It was a long and harsh journey, but I determined to be an empowered patient and no longer an ostrich hoping that ignoring problems makes them go away. I don’t take too much […]

  14. […] (That’s a long story made very short, but you can read a bit more of our story on epatients.net.) […]

  15. […] since my kids and I have been disbelieved so many times and turned out to be right (examples in an article I wrote for e-patient.net a few years ago). But I’m also a healthy skeptic and lover of evidence. First, let’s look at […]

  16. […] The Unwilling E-Patient: Learning to use my mother-of-a-patient voice on E-Patients.net […]

  17. […] are many more. Part of the story is on epatients.net and some other parts on Howard Luks, MD’s website. THE POINT? Everyone makes mistakes, so things […]

  18. Sandy says:

    Hello Kelly,

    I am in the beginning of trying to see an RA doctor. What I currently am dealing with is chronic and severe cervical and upper back pain. 1st stop was my primary Doctor, then finally went to an orthopedic doctor that even after having an MRi that showed severe damage in c5 c6 pretty much told me to deal with the pain and there is nothing they can do. Got a second opinion and it was pretty much the same. Well neither of these Doctors seemed to care that my pain was so severe that I am in tears most of the time. Next step back to my primary to request he sent me to pain management, which is where I am at now. Ok next, a week ago I went back to my primary because pain was now extreme in both hands. He did blood work and X-rays, again my body failed me to show the correct results, so he said give it 3 weeks if still in pain he would refer me to an RA doctor. I left frustrated again,, I happen to have online medical records so in looking back I found that in Nov last year I complained to him about hand, wrist, knee pain. So have just asked if this will take care of my 3 week waiting period, still waiting for that response I send late last Friday.
    Really long story but I am frustrated, I now have to use a cane to walk, can only walk for maybe 2 stores using pain pills every 6 hours. Your story gave me a little hope there might be a chance to live again .
    Thank you
    Sandy

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