Back in 2017, before my MS went into hyper-speed mode, I shared what I thought at the time was a very open and vulnerable post about some of the body image issues that re-emerged for me two years into my diagnosis.

It wasn’t easy for me to hit “publish” on that post called “Broken eyes, broken brains and the things we don’t talk about.” I re-read it just now trying to get back to the headspace I was in back then to discover what I used to consider to be a taboo topic that caused me great personal pain. That pain was very real back then, I’m not taking any of it back, not even a little bit of it, but now it reads to me as almost quaint. I was so young in MS years that I still ached over the more superficial aspects of how my MS was affecting me. How I looked. How I felt about how I looked. How I imagined other people were feeling about the way my newly disabled body presented itself to the world. The energy I no longer had for donning cute outfits or even a little bit of make up. I still struggle with this kind of thing as I have become a full-time wheelchair user and the number of people who have had to help me shower (and have thus seen me butt-ass naked while slumped in a seated position) has grown to a number that would have been unthinkable to me back then.

And yet, there are new things I’m avoiding talking about these days if I’m honest with myself, things that have led to my posting becoming less frequent and my writing less cathartic because these new things are terribly shameful to me. When I’m actively avoiding something you can be almost certain that it’s something I feel uncomfortable claiming as my own. I tell myself these things I don’t talk about aren’t for me – a privileged, fully-employed disabled woman who has so many advantages I often feel embarrassed by them. I can’t “own” the thing I’m avoiding talking about because I shouldn’t. You need to know that as I’m typing these words I am fully aware of how wrong-minded they are. I am in ever-so-much therapy! Mine is a very thoroughly examined psyche, you see, and Dr. KB my latest therapist has been an actual miracle in this disabled life. When her bright blue eyes pop on to my computer video screen, I actually heave a sigh of relief. I stop holding my breath. I attempt to hug her with my eyes. She’s that magical.

I used words with her this past Thursday that made me shudder even as they were coming out of my own mouth, “This overwhelming anxiousness, this constant fear, this full-on assault I’ve been dealing with for the past two years feels almost traumatic to me. And lately it’s hit a fever pitch. Like, I know this is crazy for me to say in this circumstance but I sometimes feel like it’s much more than anxiety I’m dealing with. I feel like I have some kind of PTSD. I can’t even believe I just said those words!”

And then I started to cry. Another emotional reaction Dr. KB brings out in me, bless her heart.

Coincidentally, Dr. KB has extensive experience treating patients with actual PTSD from all sorts of events that typically lead to its onset. That could be veterans of war. Victims of sexual violence. People who had traumatic events in their childhoods or lifetimes. To me, these are the kinds of patients who have the right to own a term like PTSD. Victims of actual trauma. Real trauma. Not my life experience that while incredibly difficult these past two years, could I call it “traumatic?” This idea made me squirm.

There was no mistake, though, that I was feeling desperate. The anti-anxiety drug I’ve been on for the last year or so has recently stopped working its usual magic. I had an appointment later that same day to talk to my psychiatrist about potentially upping my dose of klonipin, a common Benzodiazepine used to treat acute anxiety. Klonipin is highly addictive. Being on it for over a year can sometimes be a bad idea. I stress SOMETIMES because there are people who safely take klonipin their entire lives under a doctor’s care and that is nothing to feel a certain kind of way about. I want to be crystal clear on that point.

The problem with me and klonipin is that it appears to make me feel even more anxious because I have become dependent on it. Whether that’s a true physical dependence or a psychological dependence or both is largely irrelevant. I feel like I need it. I do things like randomly spill the pill bottle out on my kitchen table to count the pills just to make sure I’m not close to running out before it’s time for my refill. Then there’s the fact that my current dose isn’t cutting it anymore but I am still desperate to take it. I want to take more of it so much so that I recently convinced my beloved physiatrist Franzi to increase my dose to allow me to have a third dose on particularly rough days. I can be very logical and convincing. Ask any of my co-workers. Franz wasn’t happy about it but he listened to me. What he didn’t know is that I was only telling him part of the story. I also do that when it suits me.

Franz prescribed the Klonipin for me originally during my last stay at Inpatient Rehab. It was my third stay. I didn’t want to be there. I didn’t want to spend Thanksgiving alone eating hospital food. I was completely overwhelmed by my daily three hours of MS Olympics performances which is what the grueling physical and occupational therapy schedule feels like. But what was really eating at my brain and setting it on absolute fire was why my goddamned baclofen pump wasn’t making it easier for me to walk or even move my legs. Point blank, that is why I decided to go to this extreme measure of treatment in the first place. I was assured by my MS specialist and my surgeon that this pump implanted in my gut and connected to my spinal cord bathing said cord in liquid baclofen 24/7 would help me better ambulate.

My third inpatient admission happened because my legs would not physically move and I was unsafe in my home. We surmised that my pump might be malfunctioning. Maybe there was a kink in the catheter that delivered the medicine to my spine. Something had to be wrong because that pump life was supposed to make my legs work better not worse. We did all of the tests. We did all of the scans. We put the interventional radiology team to the test trying to find the malfunction in my pump.

There was no malfunction in my pump. It was working just like it was supposed to but my body was clearly not following suit. When the interventional radiologist delivered that news, it broke me.

I’d never felt like that before. I started crying and didn’t stop for two solid days. It was late afternoon on a Friday, so my IPR physio schedule was light for the weekend. All I had was my brain and a lot of time in a hospital bed. I’d attempted to soothe myself earlier in the week by ordering my own sheets for my hospital bed to make my body feel less like I was laying in sandpaper all day. Yes my sheets were like butter but I didn’t feel soothed. I stared at the valance on the window in my hospital room obsessively. It was an abstract pastel square pattern. Very seventies chic. If only I could change that valance, I thought. If only someone could come visit me. But that would suck because I couldn’t imagine allowing anyone who loved me to see me in such a broken state so it was probably for the best that Covid protocols prevented visitors. That valance though. If I could change that valance maybe I could stop crying. Maybe it would help.

After two days of this, Franz returned on Monday to see me and we agreed I need something to stop my brain from reeling so I could get back to therapy to make the most of my latest incarceration (my third within 2020). Klonipin came to me in a little clear plastic cup that I tossed back greedily feeling more desperate than I’ve ever felt in my 53 years of life. I eventually calmed down but it didn’t happen instantly. About a week later we upped my dose to .5mg twice a day and that is where it has stayed for the last year until a few weeks ago when I desperately called for an increase. One and a half milligrams of Klonipin isn’t even close to the 4mg max daily dose for extreme anxiety. But it seemed to be making me worse not better. I was confused. Stymied.

The waves of desperation continued. I’d take a pill. It would settle down – until it came back with an aggressive vengeance only a few hours later. That wasn’t supposed to happen.

I had work to do! I had to function! My affect is flat. My ability to concentrate is non-existent. I swing back and forth between utter terror and dead calm with frightening frequency. During my session with Dr. KB where I spilled all of this out in a torrent, she said to me, “I don’t think this is generalized anxiety, Beth. I think you’re suffering from a from of PTSD – which the klonipin isn’t going to help. In fact it is likely to make it worse. We have other options. Different kinds of therapy that are trauma-focused that I think will help you. You can work with the psych team on a better medication protocol. We need to deal with the root problem. Are you open to that?”

Well then.

One of the tools used to clinically diagnose PTSD is The Clinician-Administered PTSD Scale for DSM-5 (CAPS-5), a 30-item questionnaire that clinicians use to better understand the a particular patient’s experience. Dr. KB and I went through this exercise together on Thursday afternoon. My score was off the charts. This made me incredibly uncomfortable. The quiz had to be wrong. I made her do it with me again. Three times.

Why I am so hesitant to claim this diagnosis as my own is very telling. I don’t get traumatized. I solve problems. I deal with things head on. I do all the therapy. I take responsibility for my situation. This felt like I wasn’t owning it – owning my mental health challenges. It felt like an excuse. If I could take a drug and continue to function, continue to get shit done and plough through my work days like the productive disabled executive I am, somehow I would be ok.

Until I wasn’t. Until a generous week off at Thanksgiving gifted by my company to all employees almost did me in. Weekends are bad enough! A week without any routine book-ended by weekends on either side sounded like my worst nightmare come true. I scared myself with the dramatic swings my mood was taking from one extreme to the other. I was virtually manic at some points. Virtually catatonic at others. Sobbing uncontrollably with such intensity I scared myself and a few members of my family and my roommate, too.

My psych consult was scheduled after my weekly call with Dr. KB. I didn’t bust out with the PTSD news just yet because I wasn’t sure I really believed it. I started into the list of things I obsess about (it’s a very long list). I explained the waves of terror and mania. I talked about how klonipin worked for a while but it didn’t seem to be working anymore. Maybe I needed a higher dose?

“I have to tell you, Beth. I think you’re dealing with something very different from generalized anxiety disorder. The klonipin is probably making it worse because I think you’re experiencing PTSD. Hear me out…” After I collected my blown mind from the desk in front of me, we talked more about PTSD, how we might treat it, how my therapy would play a big role, why I should try very hard to be open to this perspective even though she was sure my initial reaction would be to reject the diagnosis. The long term plan is to wean me off of the klonipin roller coaster completely but very, very slowly while we add in higher doses of things I’m already taking for depression. I don’t want to get into the details of my medication cocktail because it’s very specific to me and there are likely hundreds of different combinations that could come into play for other individuals and as we’ve established effectively in the past, I am not here to give medical advice.

I am here, though, to talk about the fact that PTSD and how it relates to chronic illness – aggressive like mine or otherwise, needs to be talked about more.

I didn’t want to talk about it at all and that’s mostly how I know I personally need to talk about it. Have I been traumatized by the events of the last two years since making the decision to implant my baclofen pump hoping to walk again? You better believe I have been. I still have a hard time using the word! This is the biggest sign of all that I need to spend some time with this idea and give myself yet more grace and not more punishment (as is my ever-reliable habit). I texted a trusted friend who also has MS about this news a full 24 hours later. I felt like I was telling her my dirtiest secret. Her response? “This is something we really need to talk about more in the MS community Beth. I’m so relieved you’re getting help.”

I have very, very good friends.

There is no pat ending to this post. The mere idea of weaning off of klonipin gives me such a pit in my stomach it’s hard to find the words to describe it. I’m relieved by this notion of moving very, very slowly but I’m also anxious to get off of the roller coaster completely and resisting the urge to wean faster (THIS IS NOT A GOOD IDEA…DO NOT DO THIS.) I’m daunted by thinking about things like how I’ll get through crazy stressful work days or on the other extreme, how I will survive weekends and yet more office closure looming for the Christmas holiday (thanks again, Parisian company owners but have you thought about how these generous time-off gifts affect ME?!).

But writing this post is a first step. It’s always my first step, though, isn’t it?