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Chronic Disease, Patient Care

The day my doctor thanked me

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Maryland resident Shani Weber.

I have Ehlers-Danlos Syndrome (EDS), a rare disease that most doctors don’t know much about. There are few specialists in the world, so I worked to find local doctors who were willing to learn about EDS and willing to help me manage it.

EDS is a genetic connective tissue disorder that causes the production of defective collagen. Collagen is found throughout the body so those with EDS can have problems with joints, skin, organs, GI system, vascular system, autonomic system, teeth, eyes, and more.

When I was diagnosed a year ago, I realized that if I’m going to get the best possible medical care, it’s crucial to educate my practitioners about the condition. I also knew, though, that I depend upon the expertise and knowledge of my primary doctor, specialists, and therapists. In other words, I needed to view my relationship with my providers as a partnership.

It’s not always easy to form a strong relationship with one’s doctors, but here are some ways I help to make my medical appointments more productive:

  • I write a summary of symptoms and interventions.
  • I provide charts or graphs, which give my doctors a summary of my health at a glance.
  • I write questions – no more than three per appointment.
  • I identify the objective for the appointment so my doctor can start thinking of treatment options.
  • I speak in a calm manner, understanding that a lot of emotion can take time away from finding solutions.

Since being diagnosed, I’ve gone to my primary doctor once every two months or so. Sometimes she orders tests. Sometimes she makes referrals to specialists. Sometimes she examines me. But every time I come to her, I bring information about EDS from the Ehlers-Danlos National Foundation, NIH, and various medical journals. It’s always material that is relevant to the symptoms I’m currently having, and she always accepts my offerings – laughing about how I supply her with Sunday-night reading.

On a warm summer day, I had the most incredible appointment with her. We got through the questions on my list and devised a treatment plan for new symptoms I was having. She examined my spine and verified that I’m subluxing my vertebrae. I gave her a copy of a study about hypermobility and its association with anxiety, and as we were finishing up the appointment she said the most amazing words to me.

Here is what she said, as I remember it:

I want to thank you for teaching me all you have about EDS. I now know EDS can mean anything can happen. I mean, we were taught in medical school that ribs are stable, but you taught me how they can dislocate. Well, it has made me look at the other EDS patients I have differently. It helps me be open to what they are saying and has meant they are getting better care. I’m also looking at my other patients differently. Now I keep wondering if each one coming in with odd or persisting problems could have EDS. I just want to say thank you.

I replied something along the lines of, “I want to thank you for being a really incredible doctor willing to listen to her patients, learn about a condition that’s new to her, research on your own time, and problem solving solutions no matter how bizarre the symptom is. Thank you for being my doctor.”

Then we hugged it out.

There are wonderful doctors out there who really care and are willing to learn. It’s important to know that building a relationship of mutual trust and respect can help both parties: Patients get the care they need, and doctors can become  more educated. Together, these partnerships can make a world of difference.

Shani Weber is a volunteer with EDNF. She advocates for those with EDS, co-leads a support group, moderates and educates about EDS on EDNF’s support community on Inspire, presents (.pdf) at conferences about EDS, and helps others build support groups. Shani lives successfully with EDS thanks to her husband, children, and brilliant medical team.

9 Responses to “ The day my doctor thanked me ”

  1. Barbara Calder Says:

    Great article. When I did have insurance and could afford to see a doctor, I took a well written letter from the geneticist who diagnosed me with EDS , to my primary care doctor. The geneticist was in Denver, my hone and primary care dr., in Colorado Springs. My primary care dr, with my husband and myself present, tore up the letter from the geneticist and tossed it in the trash. Said it was like fibromyalgia or arthritis and in the patients mind. I never went back.

  2. Ann Says:

    That is a remarkable story, kudos to you, and your doctor, for being creative and persistent in seeking solutions. I found it helpful and inspiring. Thank you.

  3. Jan Says:

    Maybe it is the only way most general practitioners will understand that what is classed as normal..doesnt apply to everyone. Hopefully more medical practitioners will try to understand too how so many patients do not know what the underlying problem is, they can only try to explain in laymans terms a symptom or sometimes puzzling ‘injury’ they seem to have. Its soul destroying to feel so misunderstood at times. One of the hardest things is to feel you are imagining or dramatising physical problems. It is also hard to answer docs questions when you have only your physical self to refer to, which is classed as outside ‘normal’ limits. It is a hard , steep learning curve.

  4. Nancy Says:

    Thank you Shani . You have been a very helpful resource for me as I have tried to educate myself on this illness that has soooo many issues and Soooo much pain involved. I have been seen by some amazing physicians, starting at age 13, (multiple neurologist, cardiologist, rheumatologist, internists, OBGYNs, ortho, dentists,periodontist, orthodontists, pain management,GI’s,surgeons, PT’s…) all of whom I have great respect and have received excellent care… For each individual problem. I myself am an OT and have had some of the very best OT’s and PT’s work on my body OFTEN to get me through another day of work myself! I heard so many times “I don’t know how you function, you are just hanging on your ligaments!” I knew something was wrong, but what?
    A pain management specialist said to me once as I was leaving her clinic “you remind me of a lady I saw many years ago who had EDS.” About a year and a half ago I remembered that comment and started a search. After about 2 articles, I said “this is me”. I saw my neurologist and he patiently listened and looked over my history and the info and he set up an appointment with a geneticist that day and I was diagnosed with EDS. He and all my physicians have been willing to learn with me and it has changed my life and my perception of myself. The doctors I had been seeing all along were excellent and caring people. My situation just helped me to understand how important it is to get the word out about EDS and I appreciate all you have done to increase awareness.

  5. Lynn Erickson Says:

    I’ve been living with the EDS DX since 2007. I also have a fraternal twin sister. We both have EDS. The joints most affected are my hips, shoulders and spine . My subluxing posterior ribs create instability. My digestive system took the major hit early on in my life. My twin has no gut issues, no subluxing ribs and has Marfan Habitus features I do not. We all present differently, even in the same family. Thank you for listening .

  6. Beverley Nunnally Says:

    This is a great article. I have been very lucky with my primary care dr. of 20 years. From things he has brought up in conversations I beleive he does research on his own to know more about it. He is wonderful. My ortho surgeon is very familiar too. I don’t know if this is too much to ask, but could you email me a copy of this. I would love to send it to both drs and thank them for being whothey are. Thaank you so much for the advice.

  7. Bryan Says:

    This is so encouraging and familiar all at the same time. Our daughter has been dealing with EDS for years and the slew of doctors we have seen that don’t have a clue is staggering. She suffers dislocations of the ribs, hip, spine issues as well as chest pressure and pain. It’s a very lonely affliction indeed… “but you don’t LOOK sick”

  8. Caryl Mauk, RN, MSN Says:

    I am a nurse, now disabled from heart problems. When I was practicing, I researched patient conditions daily. I kind of hate to see so many people so surprised that a doctor would do research on a puzzling case or a condition he/she is not so familiar with. That is the doctor’s JOB. Any doctor who thinks they stop learning after their training should just retire now. The arrogance evidenced by the behavior of so many doctors is just appalling. That said, the story above is reassuring. Not only did this doctor research and try to understand, she accepted what her patient told her and worked with her as a partner. She was able to leave behind some of her preconceptions and be flexible in her approach, and then apply this thinking to her other patients. I am delighted that Shani has this kind of relationship with her doctor.

  9. Elizabeth Rankin Says:

    I enjoyed very much your article and happy for you that you have found such a gratifying relationship with your doctor. I am writing a book for this very reason. I, too, was motivated by my experience, because a young cardiology resident “listened to me” tell him “about my obstacles to care”during the time of my heart attack 8 years after the incident because he asked me a very profound question that moved me to tell him “my story.”

    As a nurse and a patient I know both sides of the relationship, those whose lives you can transform and those whose lives have transformed yours. It’s a wonderful feeling for both.

    Elizabeth Rankin BScN Canada

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