Imagine getting sick, and never getting better. That’s the reality of millions of people all over the world who suffer from Myalgic Encephalomyelitis, AKA Chronic Fatigue Syndrome. Like my UCTD, it’s an autoimmune disease, but with some key differences. Still, I can relate to a lot of the things filmmaker Jennifer Brea deals with.
When Jennifer asked if I’d like a screener of Unrest, I was thrilled. Not only was this a chance for me to learn more about ME, but it was also another opportunity for me to advocate for people like us—people living with invisible illnesses.
Unrest is too relatable. I nodded throughout the entire documentary, and cried quite a bit too. Like me, Jennifer went through a long period of going undiagnosed and untreated because her doctors didn’t believe her. Like me, Jennifer wonders if she’s bringing anything to the table in her marriage. And like me, Jennifer lives for the moments when she can push herself, even if she knows she’ll pay for it dearly.
While Unrest taught me a lot about ME, immunology, and the daily lives of people living with ME, it also made me fully appreciate that Jennifer filmed the entire documentary from her bed. That alone is impressive, but I’m also in awe of how much information she gathered. Let’s face it: it’s hard to get data on autoimmune diseases. Jennifer did it, though.
No one knows disease like a patient.
The only thing I disliked about Unrest is how much it reminded me of my own situation; I hate that there are so many of us living with these debilitating diseases, yet modern medicine is barely beginning to understand how to help us. I see this as a good thing, though, because it’s my hope that able-bodied people will watch this documentary and gain a bit of an understanding of what people like us go through. Maybe it’ll make people uncomfortable enough that they won’t make assumptions about ME and other invisible illness patients.
Despite depicting the pain of living with ME, Unrest ends on a promising note.
Patients living with diseases like ME might be bedridden, but when we gather our collective energy, we can accomplish great things. It’s through our yearning for better lives and the support of dedicated physicians that we’ll continue to make advances.
Unrest is available for digital download (you can buy your copy here). It’s also available for streaming on Netflix starting January 15th.
Disclaimer:I was provided a screener of Unrest in exchange for an honest review. All thoughts expressed in this post are my own. I’ve also included affiliate links, which allow me to receive a small percentage of your purchase.
It’s been over 24 hours since everything went down and I’m still processing it. Everyone processes things differently—even from experience to experience. Sometimes you need to talk, even if you’re relaying the same information over and over. Other times you just need to quietly mull. I’ve found, in this instance, I’ve needed both space to just absorb and room to articulate.
Even though I’ve talked about it a bit on Twitter, written in my journal, ranted (like a hundred times) to my husband, vented to my sister-in-law, and tiredly filled my best friend in, I still keep running through it over and over again. And, even though technically I’m on a weekend-long social media cleanse, I really felt the urge to sit down and blog about it.
So here I am.
Part of me is in shock, enveloped in complete and utter disbelief. And then there’s the wide-eyed anxious part of me that is all, “See, I told you so.” I’ve been through this before, though, so many times. It’s not really surprising. It’s kind of just my norm.
This past summer, I got a sudden letter in the mail from my rheumatologist’s office, telling me that Dr. M was leaving the practice. I had a panic attack while reading the letter. While I’ve had a complicated relationship with this woman—during my first ever appointment with her, she suggested I see a psychiatrist and that was that—I’d made a lot of progress with her. She was listening to me, she’d given me a diagnosis, and she’d started me on a treatment plan. I spent years jumping through hoops trying to prove to her that I am not a drug addict or crazy. And finally, after nearly ten years, I was making progress in my medical journey. I was getting my life back.
I have joint pain. Often it is debilitating. There is radiological evidence of it; I’ve had several x-rays, MRIs, and even a bone scan that showed bone spurs and some other things in my joints. My illness causes marrow-deep fatigue. It flares from time to time, especially during periods of high stress or sudden changes in weather (like winter, rapidly increased humidity, or a drop/rise in barometric pressure). It behaves like an autoimmune disease—which runs in my family. However, my blood work is always inconclusive. I am seronegative for RA and I’ve had borderline results for ANA and double-stranded DNA.
Dr M determined that I have enthesitis-related arthritis, meaning the join pain is caused by inflammation in my tendons, where they connect to my joints. She explained that ERA doesn’t show up in blood work. She told me that she would treat me as if I have Reactive Arthritis, but that it could still be Rheumatoid Arthritis. She started me on a DMARD and, when it helped a little but had some nasty side effects, urged me to give it another shot. If it still gave me headaches and fatigue, she said, we would try something else.
And then I got the letter.
The letter informed me that she was being replaced by Dr. S, some guy I’d never heard of. I was immediately anxious because I’ve had so many specialists—most of them male—over the years who have brushed me off. I’m anxious in general when seeing a new specialist, but the thought of losing Dr. M and having to start over with a stranger was terrifying. Still, I tried to be brave about it.
I scheduled one last appointment with Dr. M, where she gave me a cortisone shot in my right big toe and explained that she thought I had bone spurs there and in my other big joint in my foot. She said I might possibly have RA and osteoarthritis. And she urged me to give SSZ another shot, even though I asked if I could try another DMARD.
She instructed me to schedule a followup with the new guy for my toe. Cortisone shots don’t always work, and she really wanted me to see a podiatrist if my toe continued to be painful. It was so stiff and hurt so much, I could barely bend it. I couldn’t put weight on it at all and basically had to walk on the ball of my foot—which of course aggravated the pain in my other joints.
I couldn’t schedule my followup yet because the office didn’t know Dr. S’s schedule. This kind of irritated me, but I talked myself down and told myself to give him a chance. I was supposed to call the office to schedule it in a few weeks, but I got super busy with book stuff and it was summer. I always have very minimal pain in the summer, plus the cortisone shot helped and my toe was better. Plus, if I’m going to be honest, I was still super anxious about seeing the new guy. As summer wound down, though, I knew it was time to get back to my health and bite the bullet. So I did it. I was super proud of myself.
In the weeks that passed while I waited for my appointment, my arthritis started flaring. I felt fatigued every day. My joint pain increased. I’d stopped taking the SSZ again because the headaches and other side effects far outweighed the benefits, though it did help a little so I knew we were on the right track. I’d talked to other spoonies with similar diagnoses who’d recommended some DMARDs, so I knew for sure I wanted to try something else.
On the morning of the appointment, I got up early. I was anxious the night before so I didn’t sleep well, but I did sleep. I ate a tiny breakfast even though my nerves were shot. I treated myself to a coffee from Dunkin Donuts. I showered, dressed up—which is special because I’ve mostly been wearing shorts or leggings—and did my makeup. I made a huge effort to make myself feel good. And, I’ll be honest: I also went to great lengths to look like a responsible patient.
Though I’m ashamed to admit it, I’ve been mistreated and accused of drug seeking so many times, I often dress up when I go to the doctor’s—unless it’s someone who is familiar with me and someone I trust. Then I break out the sweats but still rock the makeup. 😉 I want to stress here that I know people who struggle with substance abuse are patients, too—patients who deserve medical care and kindness and respect. So many doctors make assumptions about chronic pain patients, too, which often makes it difficult for us to get those same things that we also deserve. No matter what the patient’s experience, they are a person who should be treated like a person. It’s a messy, outrageous issue that calls for an entire blog post of its own.
I brought a notebook to takes notes in and my agenda so that I could schedule my next appointment. I gave myself a pep talk and even wrangled Mike into coming with me for support, because just his mere presence eases my anxiety. Those blue eyes and the warmth and kindness that he radiates are 100%-natural Ativan, you guys. We arrived a few minutes early. I smoked a cigarette to further calm my nerves. Then we went in.
I checked in as usual and then waited a little longer than normal to get into an exam room. Or maybe it just felt longer because I was so anxious. I’m not sure. Dr. M’s medical assistant was the same woman, which was a huge relief. She took my weight, pulse, and blood pressure, as always. We went over my medications and I let her know that the SSZ wasn’t working out so I’d stopped it. I admitted I was nervous about meeting Dr. S but she assured me that he was very nice.
And he was. He was soft spoken and very gentle during his physical exam. But he completely ignored everything that was in my chart, everything that Dr. M had told me. He brushed aside my questions. He insisted that I couldn’t possibly have arthritis because my blood work is negative. He told me that ERA would also show up in blood work. When I asked him questions and explained that Dr. M had told me otherwise, he brushed me off. He told me that I probably have fibromyalgia—something I’ve heard a thousand times from other specialists who either couldn’t figure out what was wrong or didn’t want to listen. When I explained—patiently—that I’ve been determined negative for fibromyalgia several times because I do not have the tender pressure points, he brushed me off.
I know several people who have fibromyalgia, who have told me that their experiences are completely different from mine. They have muscular and nerve pain, not joint pain. I have joint pain, not muscular or nerve pain. And when I tried Neurontin, a medication for fibromyalgia, I had an extremely adverse reaction to it. I asked Dr. S if fibromyalgia affects your joints, and he gave me a completely hedge-y answer.
He also kept asking about my Tramadol prescription. He asked me like three times where it came from. (My primary care doctor prescribes it, and it is a low dose—only 100mg at bedtime.) Dr. S kept pressing me to consider a pain management clinic.
If the word fibromyalgia turns me off, pain management clinic really makes me tense. I’m sure they help a lot of people, just like I know fibromyalgia is a valid chronic pain illness of its own. But I do not want hard painkillers because they are only a temporary solution to my pain. Plus, to be totally honest, they hit me too hard. I can’t function on them. I’ve only ever wanted a DMARD because they are a long-term treatment for my arthritis. I’ve literally never walked into a doctor’s office and asked for pain medication. NEVER. Because not only do too many doctors automatically assume that’s what chronic pain patients are looking for, but because it’s an automatic death sentence if you have a chronic pain illness and want to be taken seriously. In fact, I’ve asked to be taken off both Percocet and dilaudid because I did not like how they made me feel. It scared me, for example, how quickly my oral dilaudid dose stopped working and how I had to increase the dose literally the second time I took it to the prescribed two tablets a day—when one had worked fine the night before. I told my PAC at the time that I just wanted to go back to Tramadol.
But at that point in the visit, I couldn’t articulate any of this to Dr. S. I just sort of froze. Tears were at bay and it was all I could do to not start sobbing in the middle of the exam room. Panic closed in around me and I could barely breathe.
Dr. S said something about running blood work one last time, but that I can’t possibly have arthritis and it’s probably fibromyalgia. He told me that he didn’t want me to take SSZ anymore, that I didn’t need those medications. And he again recommended a pain management clinic.
I couldn’t get out of there fast enough.
Tears were rolling down my cheeks as I hurried out of the office. Running down the stairs, I focused on sucking down the rest of my iced coffee because it helped hold the tears in. By the time I hit the parking lot, though, I ran out of coffee and was sobbing. I was walking so fast, my body so pumped with flight adrenaline, that I couldn’t even feel my normal joint pain—and Mike could barely catch up. I tried really hard to keep it together, but I could barely get the words out to ask for a cigarette. As I lit it, I completely broke down. Mascara lines down my face and everything.
Hello, full blown panic attack.
Once it was over, this weird calm numbness washed over me. I’ve never experienced that before. It would be super cool if panic attacks could always end that way. I focused on helping a much-loved family member with her own doctor appointment. In a way, it was kind of good that we had back to back appointments in separate towns. In my numb state, I was calm enough to be there for her and it also took my mind off things.
But of course, it didn’t last.
Wave after wave of anxiety hit me once Mike and I got home, even though I’d taken pain medicine, which always helps relax me in both body and mind. It didn’t this time. I’d had a headache all day because I was nervous, but it intensified as the day went on. I’m pretty sure it was a mixed tension migraine because by 10pm, I was nauseous and had light sensitivity, plus my neck and shoulders hurt. Even though I tried not to, I kept bursting into tears, which of course made the throbbing pain in my head worse. And my joint pain was also sassy.
Between that and my mind racing, still trying to process everything, I didn’t sleep. I felt completely lost and even though I didn’t want to give up, couldn’t see any other option. I’ve exhausted every resource. I’ve seen every specialist possible. I’ve literally tried everything.
I spent most of today in a numb stupor. Mostly out of fatigue but also because I couldn’t wrap my head around it. Mostly I focused on helping my family, which also ended up being a huge help to me because I couldn’t wallow.
By later this afternoon, though, I started to feel incredulous. Indignant. Completely fucking pissed. I realized that I deserve better. That, just because Dr. S is a doctor, I don’t have to take his word as gospel. And it is not at all okay that within minutes he undid everything Dr. M did for me—everything I’ve worked for over the last decade. I’d really started to make progress with Dr. M and DMARDs were helping me get my life back. How dare he waltz in and take that away from me.
I decided that I wasn’t going to let him.
As I drove to pick up Mike from work, I realized that I needed to go to bat for myself. I was not going to let this doctor make me feel this way. He might be a great doctor, but he clearly wasn’t the right doctor for me. I decided, as soon as I pulled into the parking lot of Mike’s job, I was going to call the office and complain. Make my voice heard. Insist that I start seeing one of the other rheumatologists in the practice. Make them understand that it was not okay for him to treat me like that.
I was so proud of myself. More and more lately I am rediscovering my voice—and using it to advocate for myself. Not rudely, but loudly. Strong. Steady. Calmly. I was so excited when I slid into a parking spot. I grabbed my phone and speed dialed the office number. It rang and their normal announcements began.
“You’ve reached the offices of Dr. C, Dr. P, and Dr. M. The office is now closed. Please listen carefully as our menu options have changed…”
I felt my heart sink. I’ve never felt so deflated so fast. It wasn’t even 4pm yet, and their office hours have always been 8am to 5pm, Monday through Friday. It felt like someone’s sick joke.
I’m still angry, but I’m also exhausted. These last couple weeks—and especially the last couple of days—have drained me physically, emotionally, and mentally. I’m so grateful that the weekend is here, that I can unplug from social media and just relax. Cleanse. Give myself love.
And then, first thing Monday, I’m making that phone call again.