A Love Letter to a Friend with a Mystery Disease (Or What I Think of the Sexist Western Medical Industrial Complex)

A photo by Christopher Campbell. unsplash.com/photos/Cp-LUHPRpWM

Dear Friend,

I woke up early to write you a love letter. And I can’t get through it because I keep having tears in my eyes, so it’s really hard to type.

I love you. I know you know this, but I want you to know that when I love someone, they are surrounded with this protective aura of energy. It sounds weird, but I know it’s true. We have super powers like that.

So my love-bubble-aura of energy is surrounding you right now as you read this. It’s with you when you’re sleeping, and when you’re at work. It’s definitely there when you’re wanting to make it all stop, even if it means curling up in a ball and falling asleep, never to wake up again.

I have been where you are. I have had good doctors and bad doctors. My love letter to you is my letter, my story. Where to begin.

When I was in grad school, my body betrayed me. I was in so much pain. You know what they said when I went in with my “pain journal”? I’d spent three months following the Pain Journal Instructions so I could show, quite clearly, that my pain was in specific regions of my body and it hurt. A lot.

The doc looked at me skeptically and asked, “You’re a young woman. Don’t you have better things to do than document your pain?”

Ummmmm…. Sorry? Oh wait, oh no. You don’t believe me. Even though this is the most important thing for me right now. This pain.

I explained that I wasn’t really comfortable having him examine me because I didn’t think he was taking me seriously. He was aghast and ashamed, which were really unintended consequences.

I just wanted to get away from him because he was quite clearly part of the Sexist Western Medical Industrial Complex that thinks women are fundamentally crazy, especially if whatever is going on with our bodies doesn’t apply to men (because if it doesn’t apply to men, it’s not worth understanding let alone finding a cure for), and that if they can’t see it, test it, whatever it, it doesn’t exist.

(I can’t hear a dog whistle. But it exists, right?)

So I go to another doctor who actually kind of believes me, even though endometriosis at the time was something they thought only impacted older women (I was 23). And after doing a laparoscopy, he said, “Wow. You’re all messed up in there. I’m surprised you can even walk.”

Hmmmmm…

But then he advised me to have a medieval surgery that would require I drop out of grad school, be on bed rest for six months (because he was essentially cutting me in half), and then, get this, take hormones to medically-induce menopause.

(I was a young woman and I had better things to do than go through menopause.)

So I decided to get a second opinion.

And I’m super-glad I did because just up the road in Cleveland, there was a sweet doc who said, “Hey, I just got out of medical school and we have this great surgery that only puts in 3 teeny-tiny little holes around your belly button and we’ll fix you right up!”

So I did that, and I got better. And I wrote that other doctor a very nice letter saying he may want to stay current on developments in his field because he almost ruined my life.

Then I got the yeast thing, which as you know is also autoimmune and, like endometriosis, is a mysterious disease that no one in the Sexist Western Medical Industrial Complex can seem to figure out because it generally only impacts women.

They can put a man on the moon, but they can’t figure out how to cure a little bacteria that is wreaking havoc on my life?

Yes.

I’m still on that journey, and I’ve traveled through Western medicine (“Why don’t you take this super-toxic drug? It may destroy your liver, so we’ll need to test you every week to see if it’s inducing liver failure.”), spent some time hanging out with the osteopathic docs and Chinese medicine ladies (they actually relieved my symptoms more than anything), found my own way to deal with it (but not cure it), and I am still winding my way, most recently with the NASA doctor.

Yes. I am now seeing a doctor who once worked for NASA. And yes, I find it ironic that it takes a doctor from NASA to help me cure my yeast problems.

Man on the moon, right?

The point is, when doctors don’t know what to do, they do very stupid things. They tell you you’re crazy, suggest some kind of radical stuff like let’s cut your body in half or medically-induce menopause, etc. And that is really, really hard to navigate because you’re sick, really sick, and that’s not the time to have to make crazy decisions like this.

So I get it. That’s all I want you to hear and know in your soul.

And I know you, like really well, actually. I have come to know in my soul that you are strong enough to handle this. Seriously. So I can say as a fact that you will get through this. There is no other option.

This is just the Bad Time. The time when the docs are telling you, “Hey, you might be crazy.” And you very well might be. Who wouldn’t be? You are disabled right now and that’s enough to make anyone crazy.

This is the time when you feel like an utter failure at everything – as a professional, as a mother, as a wife – you may even wonder, “Why do I exist? I’m only taking up space from everyone’s lives. I am a burden. Maybe the world would be better off without me.”

Those are the really bad days.

This is the time when formerly pleasurable activities are bad. Even watching t.v. is bad because it only shows happy, productive, healthy people. The contrast is painful.

Sleeping is bad because you have to wake up to it all again.

Talking to friends is bad because you can’t feel better, and you know that is what they desperately want and need from you. But you can’t give them that, so you feel guilty.

All of it is bad.

So you will  have to *temporarily* sit in the bad. I’m sorry about that. It totally sucks. I have no answers for how to sit in the bad. I’m actually very bad at it.

But I’ll sit in the bad with you, ok? And if you’re ever ready to blow the bad up, I’ll be there, too. I’ll sneak you a little assisted-suicide medicine and we’ll do some kind of ceremonial thing with your husband and the kids and we’ll make it all stop. (I’m just kidding. Kind of. Just know you have options.)

And if there’s something in between sitting in the bad and blowing it all up, I’ll do that, too. I’ll manhandle my way into the NASA doc’s office and make him see you tomorrow, I’ll give you thousands of dollars to fly to get treatment in Malaysia, I’ll adopt your kids even though I don’t do babies. Whatever it is, you know I’m up for it.

Love,

Your Friend

 

7 thoughts on “A Love Letter to a Friend with a Mystery Disease (Or What I Think of the Sexist Western Medical Industrial Complex)

  1. karibosworth says:

    You could have been me talking. Went through the same type of thing. And, being a part of western medicine, yet fully aware of how limited it is, only made it worse. I had a doctor tell me to “stop being a nurse”. She didn’t want to listen to me at all. Dismissed me as having anxiety and depression. Which I now DO have partially from going through that whole experience.

    Like

  2. cariloveslife says:

    Although I never went through this kind of torture (yet) and accordingly can’t really understand your pain, I admire your style of writing! It’s not specifically aligned to that one topic, but can be referred to any other “mythical” disease, I.e. depression or various other mental illness and I think it’s very important to focus on the fact that persons concerned are NOT crazy, and that they don’t imagine this atrocious pain👌 and your text is amazing, I really enjoyed reading it despite the serious topic❤

    Liked by 1 person

  3. kjmw2 says:

    A friend sent this to me, and I’m so thankful. This post resonates deeply with me. The words like a warm blanket I wish someone close to me had known I needed wrapped around my shoulders, too. How deeply you see. I have experience with a condition I realize from another post that we share, but also the way I was treated trying to chase down the mystery source of pain that turned out to be IC and pelvic floor hypertonicity – aka 20 years of, “shrug – I dunno.” Anyway, since then these have, like a hydra, evolved into a many-headed mystery plant. So I have to ask you two things: A) Is your NASA doctor by any chance in Northen Colorado, we have one there and I’ve been thinking about trying to find a way to afford him. And B) You didn’t by any chance hear that about that assisted suicide family ritual from a hypnotherapist did you? Because that was MY plan a couple of years ago! I thought it was SO genius and logical. No more hiding in the shadows thinking about the lovely deed, or encouraging a harmonious divorce whereby I coparent from a feminist compound after having selected for him a coterie of awesome, fun, new wives/mothers…. but seriously – I did come up with that plan. Later I felt a bit crazy, but it’s good to know someone understands and doesn’t find it self-pitying or despicable. Understands that it should be a perfectly viable option should that time ever come when you just can’t do it anymore. Everyone deserves that dignity and I wish there were more people like you who really get it and express love and support so well. Thank you for this post, for your honesty and courage, and love for this crazy world.

    Like

    • AKO Collective says:

      Oh my goodness! I’m so glad this post found it’s way to you! Yes the NASA doctor is Billica. There are actually two of them – brothers – and they are equally talented. I am about 6 weeks into treatment. First step was fortifying my immune system and now I’m on something to treat a parasite that he thinks I got 20+ years ago that may be underlying all of my autoimmune issues. Everything I’m taking is a vitamin or mineral – no drugs – and many are adopted from Traditional Chinese Medicine which I found affirming because that science has been around for thousands of years. The wait is about 3 months to get in, so you could schedule and then cancel if needed. That’s what I did. Total cost was $1,000 which is about what I pay on my dog so I finally just bit the bullet and did it for myself. I have a neighbor who went for West Nile after 3 years of horror with traditional meds. She is cured. My best friend went after her docs said she was bipolar and should be put on Lithium. She is better too. Some have gone and had mixed results so there is some risk that it may not work out, but the love and support you find at their office is worth the money in and of itself because they BELIEVE you and are committed to you. It’s powerful. As to the ceremony I had fantasized about that for myself but hadn’t heard of it before. I, too, am glad to hear that society is opening up to this. Please let me know if you have any other thoughts. And thank you so much for reaching out. It’s a gift to know that this piece is helping people. xoxoako

      Like

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