Chronic Illness, Ehlers Danlos Syndrome, Sjogerns Syndrome

First Do No Harm

Living with many Chronic Illnesses can be so frustrating!  When you’ve put yourself through numerous tests and the inconvenience, cost, and pain that goes with testing, you expect that things will now improve.  But, when some people in the medical field are worthless, your life becomes a nightmare.

Harm

After receiving my definitive diagnosis of Sjogren’s Syndrome, my worst nightmare began.  The diagnosis, with proper tests to back it up, was sent to my “rheumatologist”.  This person then spent twenty minutes on the phone telling me why they could not accept my diagnosis.

It all came down to: the “rheumatologist” didn’t send me for the tests and they weren’t done at John Hopkins.  I was told I would have to do it “their” way in order for them to accept the results.  After listening to the argument against my diagnosis, I soon realized that this person had another problem: they didn’t want to deal with my complicated case.  So, I was dumped off of their practice.

Unbelievable!  With my insurance changing on January 1st, I was left with one rheumatologist choice (driving 2 hours from home).  After my arguing with this “doctor”, I was referred to the insurance specialist.  They finally talked my insurance company into accepting a different doctor 100 miles from my home.  They will send all my records to this office and I’ll have to wait for an appointment, someday!

Help

So, this “rheumatologist” I’ve been going to for 5 years, dumps me.  I’m still in shock!  With a life-long condition, I’ll be driving far from home, just because!  Doctors!  I have no idea what the new rheumatologist  will be like, or whether they will work with me.

“First Do No Harm” should be the attitude of doctors.  But, instead, many of them are hindered by their: lack of knowledge, god-complexes, insurance limitations, and much more.  I feel abandoned and abused by these people, who should be there to provide help.  I just want to get better.

Disclaimer: I’m not a medical expert and don’t offer medical advice. If you have medical needs consult your personal physician.

@2017, copyright Lisa Ehrman

Toxic Home Transformation Summit

8 Comments

  1. Thanks for speaking out on this issue! This has happened to me and many other patients as well. Those types of “healthcare professionals” should be ashamed of themselves!

    Some of us patients started a petition and are trying to get legislation put in place during the 2018 legislative session that will better protect patients from this type of abuse and neglect. Feel free to add your story there and sign the petition and let others know about it. It goes to Secretary of Health and Human Services Sylvia Burwell; https://www.change.org/p/stop-power-hungry-doctors-from-bullying-gaslighting-and-blacklisting-their-patients who heads up the committee over healthcare policy on a national level!

    1. xaoti

      It’s a horrible problem and no one should go through such a cruel experience. I’ve been dismissed as a “depressed” person for almost 20 years. It’s ridiculous to take such a long time to find a doctor who will do the work required to find a diagnosis. Since one caring doctor started the process, I’ve finally gotten 4 diagnosis’s that prove I’m suffering from legitimate diseases. I don’t wish this upon anyone!
      I signed the petition, and hope everyone will. Unless you have one of these problems, you would never believe it. I pray for all of us who are neglected.

  2. Mary

    I was diagnosed for Shogren’s by my dentist. I have the positive blood tests and gave up on the only available rhuemy in town. He didn’t have a clue. That was late in 2004.

    1. xaoti

      It’s a real shame that so many rhuematologists don’t understand Sjogren’s or Lupus, either. I’m so glad you got your diagnosis, though and hope you’re getting good help now.

  3. Christine Green

    As someone who is living with more than one chronic condition, I understand your frustration. I honestly think some doctors & nurses who work in specialized fields become lazy. They forget that there is a person IN FRONT of that diagnosis. A person who does not have the same knowledge (yet) as they do but whose quality of life depends upon the medical care they receive. I am so sorry that this whole situation happened to you. It is difficult enough to live everyday with illness and all that comes with it. But to have a doctor you trusted turn your life upside down is not fair to you. You are right-First Do No Harm-is something all people in the medical field should strive to uphold.

    1. xaoti

      Thank you for your understanding. I’m sorry that you have many chronic conditions, and hope you are getting the help you need. That’s all we’re asking for. 🙂

  4. Kat

    I am so sorry this happened to you. I have been avoiding finding both a neurologist and a rheumy because of my terrible experiences with both in the past.

    1. xaoti

      Oh, that is so sad to hear. No one should avoid a needed doctor! They have put is in such a terrible place, by neglecting our illnesses. I hope and pray that you keep trying and find a helpful doctor this year!

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