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When Doctors Give Up on Trying to Help You Feel Better

We all have had different experiences with doctors when it comes to treating our chronic illnesses. We have had the ones who pursue treatment aggressively, the uninterested-just-there-to-prescribe doctors, the unavailable for six month doctors, the overzealous newbies, the try to tell you it’s “all in your head” non-believers, and the unicorn doctors who actually seem to care and empathize.

The chronically ill know their doctors and nurses better than most patients. Our phlebotomists know what veins they can count on. The receptionists have our appointment information up on their computers before we even make it to the desk. Even the nurses will create some personal conversation while running through any new symptoms.

However, I have had some pretty poor experiences with doctors over the last few years since being diagnosed with Churg-Strauss syndrome. Most doctors have tried to disprove my original diagnosis or have just simply not known how to treat me.

When I first started seeing my current doctor, I was impressed with his bedside manner, his confidence in getting my illness under control, and seemed hopeful that his plan of attack would bring me something I never expected: remission. I was so excited to see him again.

Over the next year, his plan of attack would get me close to remission, and then I would have a setback and flare. I would be crushed, but he always seemed to have a hopeful backup plan — until my recent appointment.

I’ve been going through yet another flare while on the maximum dose of methotrexate and 10mg of prednisone. I was frustrated with myself and blaming myself for having yet another flare. On my way to my doctor, I felt hopeful that he’d have another good plan.

Instead, he said I’ll likely never get below 10mg of prednisone and reach remission. Tearful and heartbroken, I traveled home unsure of how to feel. I’m 34 years old, twice married with no kids due to my illness.

I have so much I want to accomplish, see and experience. How could I give up on that?

I am now in the process of trying to figure out what my triggers are. I live a low stress life now. I work from home, have a great husband and two wonderful dogs. I’m now trying to have a bunch of different allergy tests done as I am wanting these flares to calm down.

And I’ve made the decision to shop around for a new doctor.

To the doctors of the chronically ill: we appreciate what you and your team do for us. We appreciate when we receive a reply to a call or email. We appreciate your empathy and your attention to detail.

However, even when things are seeming rough for us, please never let on that you’re losing hope for us. Please keep trying.

All we want, aside from actually feeling better, is to have that optimism that someday we just might.