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:
- Go to the doctor expecting a quick fix for unusually-persistent symptoms
- End up getting passed around to every specialist known to medicine because primary care physician has no idea what’s wrong with you
- 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
- 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
- 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
- Blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
- 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