How I Forgave the Doctors That Called Me “Crazy”

jagged leaf shaped like a heart rests upon wooden boards on the ground
© a rainbow at night

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt. One major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do, ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that: How to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not.

But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.


Probably close to 95% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–did not arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to similar illnesses.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting passed around to every specialist known to medicine because primary care physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you actually have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus end up being evaluated by numerous psychiatrists who don’t find anything wrong with your mental state, or who
  6. Blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seem like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “anger” doesn’t really ~just go away~ like some of the others.

The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who said there was nothing wrong with you, when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see another psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original “chronic fatigue syndrome” was–that it was actually myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that chronic Lyme disease (or bartonella or mycoplasma) exists where I live–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not. What kind of monsters did I think these people were?

No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy.

If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and the right approach to treatment, they would have done it.

But they didn’t know. And that wasn’t entirely their fault. Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case. But when it comes down to it, there is a whole cluster of reasons why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information.

The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they might not have to wait so long and suffer so much before getting accurately diagnosed and treated.

We also can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We have to be honest and not afraid to be our own advocates. My LLMD says: The passive patient never gets better.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool–as happened to one internationally-recognized M.E. patient–to try to “snap them out of faking ill,” if you honestly believe they are sick. You do it if you honestly believe they are faking ill, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable of in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different, a quote popularized by Oprah although she’s not who originally spoke it. And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better.

I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night

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9 thoughts on “How I Forgave the Doctors That Called Me “Crazy”

  1. I always like to hear the perspectives of others who have CFS/ME. I find it amazing how we’ve all gone down a similar road, with the misdiagnoses, disbelief (on the physician, social, and personal level), and the ways we’re learning to deal with our situation.

    As soon as I knew what I had, I was immediately able to forgive certain doctors. The doctors who said to me honestly, “I just don’t know,” those doctors were easy to forgive. It’s the ones who are trying to talk me out of the diagnosis I have now, the ones who still insist this is in my head and that the doctors who are on my side are simply incompetent or not qualified to make the diagnosis, those are the ones I have trouble forgiving. Even those doctors, I realize, can’t imagine what I’m going through because they or someone they are close to hasn’t experienced this. I wouldn’t have believed it if it hadn’t happened to me. And even now, I have days when I wonder (and perhaps hope) that this is all in my head.

    I do feel like we who are afflicted and can still use our voice owe it to those without a voice to get this information out there. So, thank you.

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  2. This is perfect and wonderful. Thank you for sharing this with the world. Thank you so much. I love it, and I really appreciate all the work you put into this. It’s a lovely post! I am also happy for you, because I know how relentless the anger can be and how hard it is to get rid of it. The fact that your growth has led you to this place shows you’re…you’re really awesome. <3

    And!

    A great thing for me too. I had a bad neuro visit. :( So disappointed. The neurologist just contributed my paralysis to anxiety or depression. But he didn't "blame me for it!" Or maybe it wasn't! I don't seem like the type! He didn't want to say it was! But it might be just that! Or I might be weak because I was assumed to be trying to diet, even though I explained that I am desperately trying to gain weight because I am so skinny. O_o Yeah.

    And so that sparked a whole new anger in me because I could barely sit up in my wheelchair. I looked like I was going to die. But somehow I have a Conversion Disorder. It is hard because I recover from one doctor and manage to forgive and move on, then I just encounter another and another and it feels like the wound is opened again, you know? I really want to find somebody who will help me. I still don't understand why it is easier to do somebody casual psychological damage by telling them they are crazy when they might be dying than just to say, "I don't know what this is."

    I hope that wasn't like, ranty D: I am still mad, unfortunately. ._. But I am trying! I felt pretty good about it until today. :/ Just frustrating.

    I am not in the stage you are at all, but it is encouraging to see somebody there and nice to know that I can get there one day, too. Also nice to see somebody else acknowledge how it is, and to offer solutions on to how to calm the anger and acknowledge it at the same time.

    *hugs you tight* :)

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    1. I’m glad you think I’m awesome! Certainly the opinion of our friends means more than those who’ve only seen us the duration of one office visit, yes? ;)

      I’m really sorry you had to endure another visit of trying to justify yourself to someone who doesn’t know you and doesn’t know Lyme disease, nor apparently anything about hyperthyroidism. The fact that you’re angry again today sounds completely normal, and I don’t mean to propose that if I had another doctor visit where I was called crazy and had that permanently attached to my medical record, that it wouldn’t upset me for a time. Just now, I know where I want to end up, in forgiveness, and the understanding that we’re all just human, and it takes time to let all these things wrap around our brain when we’re so used to thinking in old ways. Plasticity, and all!

      To speed up your recovery, I might bring up the fact that, a few years ago before you knew you had Lyme and still trusted your doctors, you might have agreed with him, because neither one of you knew what was going on and just wanted to try to treat something… It really helped me when I realized they were human beings, not demi-gods with all the answers, somehow all-knowing with just some medical papers and seeing me all of twenty-minutes, after possibly seeing a patient who really did have anorexia or severe anxiety.

      It’s pretty easy, after contemplating all I wrote, to wrap my head around a doctor diagnosing mental illness out of lack of knowledge about Lyme… What I can’t wrap my head around, is a neurologist seeing your extreme hyperthyroidism, which actually HAS a test and something to look at on paper, and still not understanding how that connects to your symptoms! I’m glad he’s referring you to someone else, because this is clearly out of his skill level.

      *hugs back* <3

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  3. This is wonderful. It took me a long time to get to this point, as well… Would like to mix your words into my sons oatmeal to help him understand as well, and forgive himself… But he has to take the long way just like the rest of us. Your words remind me of this fact, and give me hope.

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