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10 Things Medical Professionals Should Never Say to Patients With Lyme Disease

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Medical professionals carry huge power. From doctors to front desk staff, manager to home care nurse. This power is due to their control over lifesaving medicine and treatment centers. They can build us up and bring us to remission, or they can tear us down and pass us on to the next. We are fighting to save our own lives every day, and if you never had to do this due to chronic illness you will never truly understand. How we are spoken to is often reflective of how we are viewed by that person. If that person is now in charge of your health and deep down you know they don’t like you, how can you get better?

These are all things I’ve been told by esteemed Lyme treatment centers with leading doctors in the field. It still doesn’t mean they fully understand us, or know what it is to truly struggle with this horrible disease themselves.

1. “Don’t call the emergency line unless it’s an emergency.”

Please listen to my entire story before answering like this.

2. “Buy multiple copies of my book so you can give it to your other doctors and they can all learn from me.”

I am paying thousand dollars to just sit in your office, so we should only be discussing my health and treatment.

3. “I have full permission to dismiss you from this practice.”

Waving that threat in my face will only make me shut down, or fight harder. It’s like telling someone they can just walk out of here and be homeless. I have nowhere else to go and you know it.

4. “You do not have a choice who takes care of you.”

As a woman hearing this from another woman, it was outrageous. If I don’t feel safe or comfortable with a certain professional and don’t want to work with them, that should be more than OK. But now you are forcing me in a position to accept this, and take away any trust I have left. It’s the most degrading, hurtful thing to pull on someone.

5. “You we’re crying yesterday so you must have a lot going on.”

Please don’t assume you know why I am crying, and it should not be used against me as if I am weaker, confused or easily manipulated. My tears are signs of strength you won’t ever know.

6. “You aren’t the only one who is sick.”

I of course know this, and hate it. None of us should be sick.

7. “Don’t worry.”

You aren’t in my shoes or body. You don’t know what I’m feeling or not communicating. Worrying is completely healthy and has pushed me to fight even harder for my health and to research and reach out to others in my community.

8. “You are talking/thinking/behaving the wrong way.”

There is no “wrong” Lyme patient. You may not like what you are getting, but you are a professional with a paid job and a life you can go home to disease-free. Please don’t pass personal judgment on your own patients, simply due to your ignorance. It’s the most destructive thing to pass onto us because we are already told by everyone else we are not right. Our treatment center and team should be our safety.

9. [raising your voice to a yell, scream, or aggressive tone]

This is completely unprofessional, terrifying and causes so much harm and trauma. I’ve seen really competent doctors lose their shit and just lay into me like I am another healthy man. I’m not. At this point, no healing is occurring, quite the opposite.

10. “You are discharged from this facility [against your will].”

The worst I fear has come true. I’ve pushed it to the limit and now I am “homeless.” I didn’t fit into their idea of a patient, and their normal treatments made me worse. They are tired of hearing me “complain.” I’m not good enough to save, I have to save myself. And that’s just what I’ll do because no person, degree or not, has the real power to stop me from finding true health and joy. And the more people who doubt me and try to stop me, I use that hurt and anger to forge ahead like the Lyme Warrior I know I am.

Lyme-literate medical doctors (LLMDs) are few and far between so as Lyme patients, we rarely want to speak against them. I fear for my own safety, for my own future of treatment, my opportunity to live the rest of my life. This is a small community and I could get a bad reputation. The choke leash has been yanked on me one too many times by people who truly have power over my life, and do not care. We deserve to be an equal partner in our healing, not seen as less than. I am strong and I know my body best. I never let people make me do things I didn’t want to before I got sick, and I try so hard now to keep that principle. But I am not privileged to have this kind of control anymore over my own body.

We have lost so much, but we have not lost our voice. It’s all we have left after everything is taken away. I plan on using mine for good and forever.

Getty photo by Rawpixel

Originally published: June 9, 2018
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