Category: depression, anxiety

Out of Practice

When a Trusted Physician Closes the Door

For those with “invisible” illness, it’s difficult to find someone who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

These nonbelievers can be siblings, best friends, spouses, children, or acquaintances, but the ones who leave us most helpless are the doctors. Physicians who dismiss our illnesses make us vulnerable to exacerbation of symptoms and sometimes irreparable harm.

Maybe you know what I mean.

You were never sick; always strong, productive, hopeful.  Now here you sit in one more exam room. How many has it been? How many white-coats have pressed a stethoscope to your chest, shone a light into your ears, nodded and wrinkled a brow in response to your long, long list of complaints? How many times have you sensed an internal eye roll? How many times have you witnessed one?  

But then it happens. You find the doctor who really looks at you. Who nods, not merely to seem attentive, but to acknowledge that she gets it; understands what you’re saying; how you feel.

That happened for me nearly five years ago.

Lyme disease can take its time before finally making a stand. Mine was like that. Symptoms came and went for years. I didn’t have the experience of seeing a long line of physicians, but I should have. I was just too hard-headed to go. As a nurse, I worked with doctors and didn’t wish to be at their mercy any more than I already was. So, I dealt with it.

Okay, I ignored it. I did my level best, anyway. I ignored the joint pain, the panic attacks, the sleeplessness, the flu-like feeling. The soles of my feet were like raw ground meat, so I bought shoes with more cushion and sat down more often. My brain, eyes, and ears didn’t like light or noise, so I wore earplugs and stopped going to movies and malls. I ignored it all until I couldn’t. In my defense, it’s tough to ignore two weeks of vomiting, chills, fever, and diarrhea.

At the time, an intestinal parasite-harboring bagged lettuce was in the news. I told my doctor that was likely my problem. Accepting my diagnosis, he prescribed the antibiotic I requested and seemed happy to spend no more than five minutes with me, order a single lab test, assure me he was impressed I’d managed to stay slim, and remind me to get up-to-date on all my “woman stuff.” Which I did.

Following that intestinal inconvenience, I began to decline until pretending became too much. My mind was going. I couldn’t remember the way home from work, how to get there, or why I was even in my car. I started trying to open doors with my cell phone, turn my dryer on with the light switch. My ears were ringing, my head hurt, the right side of my face was sliding downward. My rib cage burned; my muscles twitched, ached, and jerked. I could barely walk. Everything either hurt, malfunctioned, or both.

But it may have been the fatigue that finally pushed me over the edge. Maybe it was the day I fell asleep in a patient’s home while interviewing her. Or, maybe it was the second time that happened. I’m stubborn and that’s not a symptom of my disease.  

Luckily for me, the iron pill prescribed for my nine-point-something hemoglobin made me sick. That tiny, forest-green tablet bullied me into action and through the right door.

My new doctor’s practice had a name – not just doctor so-and-so. I won’t give the name here. I’ll just call it True Health. It was in an old brick building, in a tiny town I’d been to, maybe once in my life, but I had a patient visit there, and afterward saw the sign. I thought it was a health food store and decided to look them up, hoping they’d have an iron supplement I could endure. Turns out they did – and a whole lot more.

I’d never heard of functional medicine. Entrenched in the industry we misguidedly call “healthcare,” “ill-care” was what I actually did for a living – managed peoples’ illnesses; tried with pills and pills to keep symptoms at bay. It’s all I knew. But since functioning had become a problem, I thought I’d give this new approach a try.

Seeing a functional medicine practitioner is something else. Before your first visit, you complete a two-hour questionnaire – much of it consisting of inquiries into your bowel habits. The idea that my first visit was to last an hour and a half was jaw-dropping, but it was the first fifteen minutes that left me stunned. Turned out he was an expert in the disease, I didn’t know I had. When he said, “I think you have Lyme disease.” All I could do was repeat, “Lyme disease?”

Then he handed me another questionnaire – this one, Lyme-specific.

I passed with a very high score. Like most healthcare providers, I knew nothing of Lyme. I’d hobbled across the street and into his office that day, burdened by thoughts of Lupus, Multiple Sclerosis, Alzheimer’s – these were among the possible diagnosis I expected to hear. When I didn’t, I thought I’d gotten off easy. But, as I said, I didn’t know anything about Lyme.  

I recall bits and pieces of that day, but his words, as he left the examination room, imprinted on my mind. I have held on to them for all these years, through unspeakably difficult days. His hand on the knob, he turned back and said, “You know, a lot of people want to make you feel crazy for what you’re going through, but we don’t want that for you. We just want you to get better.”

That hope, expressed by someone who had the ability to help me realize it, pulled me out from under the fear. Until that day, I hadn’t told anyone how I was feeling head-to-toe. I’d tossed out phrases like,

“I’m so tired,” or, “I feel achy,” always shaking my head, baffled by my body’s failings. But how could I begin to list the thousand and one complaints in casual conversation? Even I thought I was losing it. Even I wondered if I just wanted attention or to get out of work. Maybe I didn’t want to hear the assurances that these things happened to women of a certain age or to women because they are, well, women.

There were many reasons I kept it to myself, but when he said that, I felt something break open; sorrow and relief rushed in together. I found confusion and clarity, peace and uncertainty. I was a jumble of emotions, but it was the comfort and compassion, the understanding and assurance – all the things a sick person needs, things I hadn’t yet admitted to needing – I found those things in abundance at that place, enough to deal with what lie ahead.

That place will soon be gone. My doctor’s practice closes the end of the year.

“My doctor was a safety net. I had settled in and expected to stay until I was well.”

The word I’ve heard most from his other patients has been “devastating,” I concur. It is a blow, a punch in the gut. The day I found out, I sensed a snap, the cord from life raft to ship had been cut. Adrift, unsure, alone, we all panicked; found ourselves floating in a fog with multiple, but untested, paths on all sides.  

What’s the big deal? Find another doctor people said; recommendations filled my message boxes and social media feeds. But those of us with Lyme know some things most don’t. Someone with an accepted, well-researched condition might think finding a great doctor isn’t too complicated, but Lyme is, in a way, illegal. Our doctors are few and far between because the risk of giving us as many antibiotics as someone with — say acne — is high. Lyme doctors can be shut down by a complaint from an insurance company or the health department for “over-treating.” They have lost their licenses because of us.  

So, we all scrambled. We googled; talked back and forth. “Have you heard of so-and-so in such-and-such town? His he any good? Does she take insurance? Does he treat with antibiotics, herbals, or both? How much is the first visit? My friend saw that doctor. He was horrible – she almost died! Ugh, that’s three hours from me. Bleh, that’s a six-hour drive. First visit is how much?! Yikes!” On and on it went, all of us forced to begin again or give up.

My doctor was a safety net. I had settled in and expected to stay until I was well. When his doors close, I must start over. He won’t be the only one out of practice. It’s been a long time since I’ve had to tell this tale from the beginning; since I’ve had to complete a new patient form or use my GPS to find my healthcare provider.  

It’s been four and a half years since I’ve had to feel nervous; uncertain about whether the person sitting across from me had my best in mind. I don’t want to wring my hands and avoid eye contact while I call out my myriad of physical aches and pains, my neurological disturbances. I dread sitting alone in a foreign and sterile room, unable to concentrate on the book in my lap, instead staring at soap dispensers, tissue boxes, sinks, and paper-covered exam tables — anything to look casual and relaxed, to not be caught wide-eyeing the door when my new practitioner walks in. Like a weathered sea captain taking sailing lessons or Jack Niklaus signing up for golf camp at the local YMCA, I don’t want to be a new patient because I am an old, experienced one.

New patient visits cost a lot of money. You have to pay the hefty first-visit price, adopted now, by most Lyme-literate MD’s. Some of them, at rates between five hundred to a thousand dollars, or more. Since there is no established treatment protocol for Lyme, your new doctor will try things — supplements, herbals, compounded capsules, untested intravenous therapies. All of these things will be costly, none will be covered; your doctor will not accept insurance. You’ll pray no one else in your family needs medical care.

 A new physician will, and should, run tests. Such a multitude of complaints warrants a broad array of diagnostic procedures. If your previous results are not recent, or this doctor prefers a different lab or method, you’ll be subjected to many needle sticks and scans of things. You may be referred to specialists until every week of every month you are committed to a doctor’s appointment. You’ll find ways to make it bearable – treat yourself — a grown-up version of the proverbial post-doctor lollipop. When I see my primary care, I’ll swing by a favorite upscale thrift store; when I see my neurologist, I’ll get a smoothie, my thyroid doctor, a gluten-free, grain-free, sugar-free, dairy-free lunch that I’ll eat beside a nearby lake.

If you choose a doctor not trained in Lyme disease, you’ll save cash but have a lot of explaining to do. As you relay your symptoms, your new doctor may become alarmed. He may wonder why you haven’t already been to a rheumatologist, neurologist, endocrinologist, allergist, sleep specialist, physical therapist, and on and on. She may be puzzled by your cavalier demeanor, the way you shrug when describing the sudden numbness to the right side of your body, or your occasional loss of vision in one eye. He may attribute your neck stiffness to poor sleep posture instead of a coinfection like Babesia or Bartonella. Same for your night sweats, those will be, most likely, if you’re a woman, due to womanhood. She will not have been taught to consider infectious disease as the root cause. You may have to bring documentation – peer reviewed studies that demonstrate the true nature of Lyme, that explain it as a collection of infections, not just one; the way it persists in the body, an ongoing, active contagion lying in wait. You’d better bring this paper work wrapped in humility and pray he is willing to learn from you.

This process, being sick, has worn away some of my stubbornness. I am giving in, making a list of those after-doctor treats. I know I was spoiled to have stumbled upon the right doctor that day; to have had one provider who understood he couldn’t send me to specialists who didn’t believe in the thing that was making me sick. I was blessed, on my second attempt, to find the help and wisdom I needed to get better. I know that what’s ahead for me is what many with my condition have tolerated their whole lives, and so, I find myself again, breaking open on the inside; once more a jumble of feelings. Hope will show up, but right now grief wins the day. I am succumbing to a path in life I did not and would not have chosen.

We all know the comfort of familiarity, of coming home after a hard day’s work, a funeral, a long trip. We see our favorite chair, our pillow; tune in to the sounds – the ones we don’t always notice because they’re always there, a refrigerator’s hum, a clock’s tick, a dog’s soft snores. A doctor’s office can be a place like that when you’re sick for a long time. After a hard month of pain, memory loss, shortness of breath, exhaustion, a familiar caregiver can be a welcome sight, can release a contented sigh borne of trust. It can be a place where you anticipate, with relief, the opening of an exam room door; where you know you’ll leave encouraged.

Once you know a doctor is listening; that he hears you and cares, you let yourself believe he wants what you want, to see you walking tall and strong, hiking the old trails, pumping the pedals of your bike. And so, you tell him your story. You start at the beginning and each visit you speak to him the middle, all that’s happening in your right-now. You’ve no doubt he will be with you at the end, bringing this affliction to a resolution of wellness.

But his role has ended. He has stepped out of your story, and you’ve no choice but to bring in a replacement; to put on the brakes, slip into reverse, and start over.

We’ve all heard people say it, that they put their lives in the hands of a doctor. I did. Not consciously, but in that room for the first time, I lay down the weight of all I used to be and now was not, could not; all I wished to be and do again. And he had willingly picked it up; lifted my burden. In that place, I had a safe room where someone wanted me to tell what hurt; where I would be validated, find healing — a place I could express my fear that I would forever be unable.

As his practice ends, mine starts over. I’m not sure if this will be the commencement of a whole new marathon, or just a long, steep incline in the middle of the same endless route. But I’m breaking out my equipment: My long list of medications and symptoms, treatments that worked and the ones that failed. I don’t feel ready, but I’ll narrate, once more, the longest story of my life and hope that my new doctor will really, truly just want me to get better.

Lyme feels like this.

(This article was first published here: https://theunchargeables.com/when-a-trusted-physician-closes-the-door/)

When Lyme Turns Blue

Sometimes we stop writing blog posts. We stop answering calls or text messages. We don’t go outside. We avoid social media. Sometimes, we avoid social. So many things we wish you knew about our disease; the faltering of our mental health is not low on that long list.
Sometimes, Lyme makes us sad. It pulls, and paws, and drags us under until we are so disoriented by the darkness, we just stop moving and welcome the rest.
Depression is not a powerful force; not a fierce warrior. It is not strategic and doesn’t attack. It is, instead, a slow sluggish thing. A blob that slithers and slips and lumbers onto our backs when we aren’t looking. It’s only super power? Sheer weight.
The heaviness presses until tears fall and angry, fearful, frustrated words squeeze out. We want to, but cannot contain them. The burden is too much. We cry, talk to ourselves, our God, friends who know. We are prickly, easily irritated in ways we don’t understand. Thoughts, that should maybe remain private, tumble out like pebbles before an avalanche. But the crumbling of the load, the torrent we were expecting, that may have let in some light and air, doesn’t happen. The last of the tears and the words skid to a feckless stop at rock bottom, but the weight remains and pins us to the precipice, trapping everything inside. This sad parasite has cut off our emotion. No more crying. No more words. The relentless pressure smothers all sensation.
That’s when we go away; when we welcome the dark cloak our unwanted passenger has thrown over us. We’re too tired to look for anymore light.
Lyme disease causes depression. Like so much about Lyme, the mechanism is not clear.
Is it the bugs themselves? The little corkscrews twisting into our brains, throwing us off balance, making us see things that aren’t there, and forget things that are? Is it because they are making warm little nests in our heads that shove aside rational thought, knowledge of recent events, the way home from work? They pervert our perspective. Along with their infectious co-infectors, they take over, invading the limbic system wreaking havoc with our feelings and ability to remember. They hijack the pre-frontal cortex until we cannot make decisions, plans, or follow a recipe; until our personality is unrecognizable. They both dull and heighten our senses and do whichever, whenever they please. Captivity can lead to depression and hopelessness. And we are prisoners, no exit left unguarded by those that have conquered our domain.
Maybe the depression comes from loss. We have lost jobs, mobility, cognition, money, goals, and marriages. We keep looking but cannot find our old selves, and we miss them. In the beginning, we were buoyed by our stubbornness – – back when we had no idea what we were really in for. We thought it a matter of determination, that we could will ourselves better, climb into the ring and go as many rounds as needed to beat this disease to a bloody, lifeless pulp. We frustrated loved ones who wanted to help because we continued to insist we could do it ourselves. But now that slovenly despicable weight of gloom wears us down and we give in, and sometimes, on and off, we give up. Some of us once dreamed of hiking the Appalachian Trail, or traveling the world. Some of us just wanted to go to work everyday and take care of our kids, garden, pets. But most of us have had to come to terms with new limitations. We’ve had to lower the bar. Once the worst of the pain subsides, and some of the fog clears from our brains, we can mostly, despite all that’s missing, find contentment but not always. Losing can cause depression and hopelessness, and we have lost much.
Maybe the depression comes from so many unbelievers. They are the majority – – some are physicians, some researchers, nurses, family, friends. They speak to us with condescension, even if they don’t mean to. Imagine losing the ability to walk, being struck with a sudden dementia, having seizures, falling, hallucinating. Imagine a sudden debility or a debility that creeps up slowly so that you don’t know how much you’re about to lose until it’s too late. Imagine having lab tests that prove your body full of infectious disease. Imagine being treated for four years, or ten, or twenty and still your tests return positive. Then someone laughs at you, maybe even your doctor, and tells you Lyme disease is not a chronic infection or that it can’t be contracted in Ohio, or California, or Flordia – – or wherever you live that’s not the Northeastern United States. They dismiss the evidence before them because, they say, ten days, or thirty of antibiotics – – if you’re lucky enough to get that much – – will “cure” you. Think about that. Years of treatment doesn’t erase the disease and you can prove it – – can prove it’s thriving inside, but the person in front of you says not to worry because you don’t have it anymore as if their magical unbelief is all it takes to eradicate your affliction. Denial of personal, undeniable truth can make you feel crazy. It can lead to depression and hopelessness. We have been denied.
Maybe it’s all the pretending. The pretending is so draining. Maybe that’s what makes us depressed. It’s been a few years that we’ve been sick now, and it seems there’s a time limit for lifelong illness that is, surprisingly, not the end of life. We’ve been making excuses well past the time allotted us by the healthy people. It might be different if we were in wheelchairs, or our hair had all fallen out, or our skin were covered in boils and we were clawing ourselves raw with shards of pottery trying to find relief, but most of us look okay. Inside we tremble with fatigue, our hearts are skipping beats, our brains are working overtime to think of the simplest words. When we feel like there’s not enough air, don’t worry, we’ll turn around so you can’t see us gasp. When our joints throb and our skin hurts and our bones ache and our muscles spasm – – it’s alright – – we’ll make sure you don’t know. We’ll keep our anxiety and depression to ourselves and if we can’t, we’ll find a reason to stay away until we can put our “good” face back on. Pretending is exhausting and can lead to depression and hopelessness. We are pretenders, afraid to be “that person” – – the one who’s always sick, who doesn’t feel well, who can’t go, who can’t stay.
We don’t want to be sad. We don’t like being depressed but sometimes, Lyme feels like this.