I stumbled across an article from The New Yorker yesterday that got me kind of excited.

It was written in 2013 by Meghan O’Rourke about her experience with autoimmune disease entitled, What’s Wrong with Me? I Had an Autoimmune Disease then the Disease Had Me.

Reading about her long journey to diagnosis where so many specialists  reviewed her symptoms and wrote her off as 100% healthy to the point where she questioned her own sanity brought me back to my own diagnosis where the very same thing happened to me. I remember working with my primary care doctor, who was on the journey with me looking at countless normal hormone tests, normal blood tests, normal urinalysis after urinalysis, normal tests for Lupus, Chrohn’s, rheumatoid arthritis, and so many other conditions, and sincerely questioning my sanity.

I’d seen so many specialists who proclaimed me completely healthy that I said to my PCP one day after what felt like the millionth normal result of far too many vials of blood, “If I’m doing this with my mind, if all of these bizarre experiences are me causing myself to feel sick when I’m not actually sick, then we better check me in to Western Psych tomorrow because I am some kind of uber powerful crazy person and I need my head put right.” Western Psych is the Pittsburgh region’s most respected hospital for people with mental illness. I wanted to go there.

Instead  of checking myself into the psych ward, I went to Italy to get back to living my best life and the experiences of that trip were life changing in more ways than one. On the upside, I finally had the solo trip to Tuscany of my dreams. On the downside, shortly after I returned home from that epic trip the first neurologist I saw diagnosed me with multiple sclerosis. An actual real-life autoimmune disease.

In Ms. O’Rourke’s piece in The New Yorker so many years ago, she describes so many of the painful realities of having an autoimmune disease it felt like I could have written the piece myself. The frustrating reality of how autoimmune disorders disproportionately affect women; how researchers still disagree on what an autoimmune disease actually is; how autoimmune disorders are so prevalent that “The American Autoimmune Related Diseases Association (AARDA) estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer.” But she really got me with this passage:

“One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” ‘Everyone will get used to it except me.'”

Ouch. There’s a truth bomb right there.

It’s a great piece and you should read it but it lost me in the end, because it ended where so many other articles like it eventually end. The author gets her arms around her new reality. “I may never know exactly what is happening in my body. But, unlike people who lack access to good specialists (and the financial resources to make life-style changes), I have been able to manage my disease.”

Been able to manage my disease…there’s a good trick. One that seems to elude me after more than five years of rapid physical decline that makes my head spin when I think about it for very long. This article was so good it tricked me into not seeing the ending coming. I have an autoimmune disease but my disease doesn’t have me. Well fuck. Here we go again.

I’m not begrudging anyone whose experience with MS comes with times, days, weeks or even minutes of feeling kind of ok. When I was diagnosed I was told to expect the same thing. I’d be generally ok most of the time but then there would be times when I had flares or actual relapses that could make me feel really sick. That could lead to increasing levels of disability. But mostly I’d be ok if feeling slightly, steadily crappy.

You have MS, Beth, but MS doesn’t have you.

Or in the words of my friend Meg, in her blog post and book about her disease her doctor told her that being diagnosed with MS was more of an “oh shit” moment than an “oh fuck” moment. That is probably true for a lot of people with this disease but it has certainly not been the case for me. This is most definitely like a series of oh fuck moments strung together over the course of five really hard to imagine years.

I mean, in year five of having MS I spent 97 days as an inpatient in the actual hospital. Ninety-seven days. I never thought I’d be a person who could say those words but here we are.

I’m not writing this post to have a personal pity party. I know there are many people out there who have it a whole lot worse than me and that’s also not ok. Nor does it make my experience any more pleasant. It’s just one of those things where you want something, anything to make yourself feel better but knowing someone (worse to love someone) who has it so much worse than you do doesn’t make you feel any better or more gracious at all. It mostly makes you feel really sad for those people that you’ve come to love.

I’m writing this post because I don’t think autoimmune disease stories like mine are the ones that often get told. We’re not told at diagnosis that this whole disease thing is a giant unknown and it could go to hell in a hand basket right quick but we’re gonna hope for the best because that’s just what people who get diagnoses with the word “incurable” attached to them do. What neurologist wants to say those words? What newly diagnosed person wants to hear them? Well. I might have appreciated it but I’m not your average bird, to be sure. I know people who told me back then that having a chronic illness was a marathon and not a sprint but I also wanted to punch those people for not getting that I hate everything about running. Period. So even that amount of “honesty” failed on me.

I got to the point last week where I called surrender. I waved the white flag. I looked at taking steps toward potentially improving my current hot mess of a physical situation and I just said no. No more. No more doctors. No more scans. No more procedures. No more “out-patient” procedures that can somehow turn into another month at inpatient rehab. No. More. Nil. Nyet. Nada. I canceled the appointment. I called the only doctor I trust and said these words:

“Franzi. We need to make a plan that doesn’t involve me going to see any more doctors. I just want to see you. We need a plan to get my curly toes UNcurly again before my next insurance-dictated Botox appointment in freaking August. We need to talk about managing this pain I’m always in in some simple, likely not very effective way, but I’d be happy with a script for 800mg Ibuprofen so I can stop going broke buying OTC meds and taking four at a time. We need to stop acting like this pump is going to make me more mobile than I am. I am now officially a wheelchair user and I want us to focus on how to make me most comfortable and in the least amount of pain possible acknowledging the reality that I sit most of the time and I use a manual chair that causes some pain in the parts of me NOT directly affected by my MS that I’d like to address realistically. I’m not giving up. But I’m changing my attitude. I’m turning hesitant optimism into not-quite-negative realism. Are you in or are you out?”

Granted, Franzi is most always in even when he calls me Dr. Nigro in a less than complimentary way. He knows that I’m the person who knows most about my disease and I’m most definitely the one living with it every single day of my life. He gets it. So I’m choosing to keep him and let the rest of it go for now.

Because, if you’ve been following along for any amount of time you know the simple truth just like I do: MS most definitely has me. It has me every second of every day. It’s not going to give up on having me because that’s just the way atypical, aggressive cases of progressive multiple sclerosis can sometimes play out. That’s my reality and I choose not to torture myself anymore trying to outsmart it. Or out-positive think the autoimmune disease that the doctors with the biggest brains don’t even understand.

I’m not having a pity party. But I am telling you that I’m in some kind of pain every second of every day. I have to figure out how to have a life while that’s going on – not keep trying in vain to stop it from going on. I’m doing that the best way I know how and yet I still give in to the allure of the magical thinking that somehow this next pump adjustment is going to somehow make me even a little bit better because that’s just not happening and nobody really knows why so what do we do?

We get fucking on with it.

We try our hardest to see this uninvited party guest jeering at us from across the room as just a thing in the room and not the thing that ruins every room. My therapist calls this moving toward our values. It’s part of Acceptance and Commitment Therapy (ACT) and it really isn’t fun. But it’s what I have to do. So I’ve dedicated myself to learning how to sit next to that asshole party guest and pat her on the knee and tell her I see her there, I know she’s not going anywhere and that’s ok. I’m still here too. So here we are. Together. In the world. Trying not to let a life chock full of pain of all sorts feel like a life that’s worth less than those lucky bastards who have their health. Or illness without the words “incurable” or “chronic” attached to them.

I wanted Meghan O’Rourke to surprise me in this latest article I found by telling me that this autoimmune life is what it is and you don’t get a break from it. Never. Ever. And somehow that has to be ok because…life, even with suffering, is still life. It’s still worthwhile. You still matter. You’re still here even if you can’t figure out why sometimes. But she didn’t tell me that. And I guess I can’t blame her for her story not being my story.

My story is my own. Maybe it’s also yours and maybe that’s why I keep writing about it and making my story public in the only way I can with the energy stores I have available. Yes. I’d love to write that damn book already but I have to work to afford this diseased-but-worthy life so the energy to write that book just doesn’t exist. The energy to figure out how to get that book published and into the world doesn’t exist currently. So blog posts are what I give the world (and myself) because that’s all I can muster.

I want this chronic illness life to make a difference in some way and this is the only way I can make that happen right now so that’s what I do. I blog.

I’d like for The New Yorker to publish an article I write about how having a chronic illness actually DOES make life really fucking hard and guess what? There’s no silver lining other than the seeing and being seen that we do, this chronic illness community, in the vast expanse of the internet that is often the only place where real understanding can happen. Imagine such a thing! But I also don’t have time or energy to pitch that article to The New Yorker as if they’d ever print it anyway.

Another friend with MS who writes the awesome blog Tripping On Air tells me often that it’s important that I keep telling my story because it matters. She tells me this when I admit to her that it always amazes me when people tell me they read my blog because it’s so damn depressing that oftentimes even I don’t want to write it.

Because the truth of the matter is that no matter how grateful I am for all of my many, many, MANY blessings that gratitude doesn’t buy me a single second where I don’t feel like shit. And that’s just not nice to admit let alone write for the public to read.

I am figuring out how to sit next to this bastard disease that doesn’t get enough research toward finding a cure because even researchers can’t hang in long enough to see where this thing comes together without people willing to donate their brains/bodies/spinal cords etc after their death to be studied.

I am figuring out how to sit next to this ugly thing I never asked for or wanted and not hate it. I’m trying to figure out how to let it just be there and not consume me.

I’m obviously a long way away from achieving that goal. I won’t give up though. I mean, what kind of choice is that to face anyway?

I’m not doing it to be strong and inspirational. I’m doing it out of spite. Because MS most certainly has me. But I have me too.