It was a dream; a dream that millions of Americans each year face in reality, a healthcare nightmare.
I dreamed that I was at an appointment with my pain management doctor, and soon after she stepped into the room and started asking a few questions, her demeanor changed. Was she angry at me? Did she see something negative in my chart from another doctor? Her demeanor became cold, decidedly “un-listening”. I suddenly had a feeling it was coming – that diagnostic pronouncement which every chronic pain patient fears – “malingerer” and “hypochondriasis”. Granted, when in my dream my doctor said I was faking it, she didn’t use those words. Doctors almost never do, except in their charts and notes and when talking to other doctors and nurses about your case. Actually, she said I had two diagnoses, both of which, when she named, I found myself unfamiliar. I asked what they were and she explained very carefully, almost tiptoedly, that she could see no cause of my pain and that she felt I would benefit from psychological counseling. It sunk in like a lead weight as years of nonbelieving doctors’ mug shots poured back into my mind. I felt like crying and screaming all at once, but I held it together…just barely. “Are you trying to tell me this is all in my head, that I’m crazy, and that I WANT to feel like this?!” I said, my face showing deep hurt, frustration, disbelief that this could be happening yet again. She subconsciously nodded “yes” with her head while her words went into a repeat loop “Well, I think you would benefit from counseling. We have trained psychologists who work specifically with chronic pain patients…” “This was NOT MY plan to be sick!” I spurted out. I couldn’t take any more. I needed to get out before I lost it mentally in front of a bunch of people who were likely armed with a bunch of needles to sedate me if necessary. I raced my wheelchair out of her office and left, intending never to return. There was no hope to be found here for a cure or relief, as this doctor didn’t even believe that I was in pain, obviously. Therefore, I was moving on…again.
This morning, about 15 minutes after I woke up, I remembered the nightmare vividly.
The emotions all rushed back. “Oh no! Did that really happen?” I was still a bit groggy with sleep, but I checked my calendar. “When was my last appointment with Dr. Z?” It was this past Monday, and I had not seen her since. “No, I felt pretty good after my appointment with Dr. Z on Monday. Things went well, and I trust her skill. This MUST be a bad dream,” I told myself, praying it really was just a bad dream until I was more able to discern sleep thoughts from wake thoughts.
Countless times in my life, however, this nightmare has been a living torture which repeats and repeats because it seems so many doctors do not believe what they cannot see with their eyes, namely pain. I still do not know how so many doctors missed my diagnoses again and again.
I’m choosing not to name the guilty physicians here, but glad to recommend those who have been my rockstars.
Mugshot 1: General Physicians
I’ve actually had a bunch of general physicians over the years who didn’t believe that my pain was as severe as it’s been. I remember several telling me the pains in my legs as a child were “growing pains” and I’d grow out of them. If they had just asked me to step down off of the exam table so my feet/ankles hit the ground and splayed in their deformed way, they might have seen a much different clinical picture. I wasn’t one to constantly complain. If I said it hurt, I really meant it, and believed as a kid that others would believe me too, as lying wasn’t something I was good at and therefore neither was it something I was in the habit of doing.
Result: From 4th grade on I had terrible leg pains. My awkward gait was noted by a clinical psychologist, but nobody believed me from what I could tell. I cried myself to sleep. None of my doctors realized I needed leg braces, and my deformities became so bad that I had to have very invasive reconstructive surgeries which I now know also triggered my CRPS/RSD and which may have otherwise been avoided with proper medical treatment. If only someone had listened to me!
Eventually, my wonderful Dr. Robert J Newman in Greenville, NC, realized there was a bigger picture behind my complaints and that we needed to try and get some answers. He sent me to a physiatrist for my back and leg pains, a neurologist for the same and other complaints, and a pulmonologist for my burning lungs, asthma, difficulty breathing. Dr. Newman is AWESOME, even though he could use hearing aid.
Mugshot 2: Pulmonologist
Pulmonary lung function tests came back mostly clear, but my lungs were still on fire every day for months at a time. Finding it hard to breathe, inhalers could be found in each of my pockets, but I continued to tell them the inhalers weren’t enough.
Result: It took two years to discover that I had a longstanding case of pneumonia and that this was the cause of the burning in my lungs! Almost every year I get the same symptoms – a cold turns into asthma which turns into bronchitis which results in pneumonia. So many years, if someone had put 2 and 2 together, I’d have been able to breathe. If someone had just LISTENED TO ME. I’m grateful I now know what pneumonia feels like because I am able to control my asthma better myself and I have gone two whole years now without pneumomia!
Mugshot 3: Physiatrist
The job of a physiatrist, at least in part, is to sort out the details and general projectory of a treatment plan for patients who have difficult and complex medical cases by considering the patient holistically. Ideally, a physiatrist will help the patient prevent further disability, accept what cannot be cured/changed, and get working on what can. The physiatrist I saw several years ago was a good doctor, but he gave up on me too soon. He noted my mental health history of anxiety and depression (what chronic pain patient, whose life is constantly being turned upside-down by pain, isn’t going to struggle a bit with anxiety and depression?!) rather vigorously in my notes and seemed a bit unsure as to whether my complaints were stemming more from psychological issues or from a physical cause. Surely this doubt was increased as I came into my appointments with several pages of paper covered in questions about the admittedly odd symptoms I often experience. To his credit, he wrote AMAZING notes and got at least 95% of the details right. Though I had to wait hours past my appointment time to see this doctor, he really spent time with his patients and I do think he cared.
I told him about my IBS symptoms and he told me I’d have to learn to manage that on my own. I told him how debilitating the pain in my intestines was, how often I had to make a B-line for the bathroom, that I was generally miserable. No referral was made to a gastroenterologist. “You need to learn to control your anxiety,” he said, as if that was possible while also trying to control my sudden bowel urges to avoid having accidents…yeah…I’ll just think happy thoughts while crossing my legs a bit tighter and biting my upper lip as my eyes become saucers, thanks, I feel more relaxed already, Doc!! I had no insurance at the time, and getting to a doctor in the first place was a major feat requiring months of phone calls to get funding.
Result: Evidently, while I was willing to do the hard work to improve my health both naturally and through standard Westernized medical means, this doctor felt it was time for me to accept the level of functioning I had without additional questioning. Not only did he not have answers (and I don’t expect any doctor to have all the answers), but neither was he willing to HELP ME FIND someone who did. After my last appointment, I wrote a letter to his office telling him that *I* am the one living with these conditions DAILY and doing the hard work of managing my health, and I feel it’s a harm to patients when doctors do not do ALL THEY CAN to help a hard-working patient get help when that patient is indeed still willing to fight to get better. This is what I mean when I say he gave up on me too quick; he didn’t realize how determined I am, how willing I am to make lifestyle changes if there is hope of relief. I never went back, neither was my correspondence returned…likely it was shoved deep into my file in a cabinet.
Gratefully, this doctor did refer me for neurological testing to determine if I had radiculopathy. He also did recognize that my car accident in 2007 had severely changed my level of functioning and that I needed a wheelchair to work and participate more fully in the community.
Mugshot 4: Podiatrist
My legs were getting worse, it was a bad year. Without money or insurance, I could not see my podiatrist who I’d seen in the past. Through lots of connections, knowing lots of people, I was able to get into see a podiatrist through the Project Access program. I was in terrible pain, feeling as though the pins in my bones were coming out. I also had disturbing paresthesias and other sensations in my legs, burning, and many stress fractures. She took x-rays but found they didn’t explain my pain. I had the feeling that she doubted the validity of my problems. By now my radar was well attuned to doubting doctor syndrome and I consistently had gastro problems every time I saw a doctor because I felt stressed out by them in general. This doctor recommended orthotics, but I told her it wasn’t enough, wasn’t something just orthotics would fix since I’d been using orthotics since 2001. She sent me on to a neurologist, noting, “There is some missing piece here that I cannot explain – why she has been so debilitated since such a young age.”
Mugshot 5: Neurologist
I think if I saw most of my “Mugshot Doctors” on the street, I would speak calmly to them and would want to tell them kindly what they missed and both how it affected me and what could be done better in the future when a patient presenting with a “constellation of symptoms” says they are willing to do whatever it takes to get better, and they are begging for help.
This neurologist, however, would not receive such a warm reception. I attended the appointment using my wheelchair, as at that point I found walking to be nearly impossible due to pain. This doctor treated me horribly, asked me defensively why I was using a wheelchair, and said right off the bat he didn’t think he could help me. He noted my use of the wheelchair was “quite unusual” but neglected to write down WHY I was using it in the first place (pain, weakness, burning, fatigue, stress fractures). He ordered nerve conduction studies, and when the results came back near normal, he dismissed my pain as psychogenic. (Now we know that CRPS/RSD doesn’t show up in these types of tests.) This doctor never performed manual muscle testing, yet claimed my strength was 5/5 and that my reflexes were symmetrical. Worse yet, he didn’t actually WRITE my clinic visit notes until a whole month later and he had 22 major errors in his notes, including a statement that my “gait was normal” – obviously he didn’t see me try to walk nor remember me telling him my gait was anything but normal! He suspected purely biomechanical causes for my leg pain and neglected nearly all the information I had provided him about my symptoms. In a note I sent back to his office, I wrote, “Burning sensations, muscle weakness, hypersensitivity to touch, and abnormal gait are NOT generally considered NORMAL”! All the money that VR funding had put into this appointment because I had no insurance…and the doctor ended up being a meanie!
Result: A horribly screwed up medical record. Not only must I now avoid the largest neurology practice in my area because doctors all share notes in that practice and I’m also not allowed to switch docs within that practice, but I tend to avoid giving that part of my medical record to any new doctors, especially without a page of my own corrections added to this doctor’s notes.
Gratefully, Vocational Rehab was able to fund a second opinion, noting that Mugshot Neurologist had been much less than helpful. My next neuro was a nice guy. Again, mostly able to see past it my mental health history to recognize something was definitely wrong though he didn’t originally know what. Eventually he diagnosed me gluten ataxia and I had some answers to what was happening. Funding then ran out, after which I waited several years before I received SSDI, Medicare, and Medicaid. I was unable to afford any doctors’ appointments.
Mugshot 6, 7, 8: Gastroenterologists
Although I’d never wish Celiac disease, IBS, Small Intestine Bacterial Overgrowth, or any other of my GI diseases upon even a numb-nut of a doctor, I do often wish they could experience a “flare” themselves for just a week or two to gain a bit of sensitivity to their patients. Yet what they cannot see, they will not believe.
I saw several gastroenerologists after finally being referred by a primary care physician. “It’s IBS; you just need to learn to live with it…” was the general answer. But I knew this wasn’t “just IBS”. Sometimes I just grit my teeth through the appointments. Other times I broke down crying in desperation. I still had no insurance, and these visits were oftentimes my ONE SHOT DEAL to get help. “Will you please listen to me?! I don’t want one more doctor to tell me it’s my head, because it’s not!!! I CANNOT eat ANYTHING and that is not an exaggeration! Every single food makes me sick, and I haven’t eaten for two weeks. I need your help.”
Mugshot 9: Psychiatry Team
During this time, my pain was consistently around a 7+, surging up to a 9 and 10. Passing out was common and my mental health suffered severely. I felt like my body was dying a slow and excruciatingly painful death that nobody else could see. I also felt that dying was the only way to find pain relief, and I sought that relief. All I needed was someone to take me seriously, to help me, and to realize how sick I was, to LISTEN to and BELIEVE me. But I’d been through the nightmare so many times I had lost hope of help, of relief. I was committed to a mental institution for two weeks I guess…I’d lost track of time; that place is like a prison. I came back home hardly better, now hallucinating vividly in part from the Wellbutrin they put me on.
During my time in the institution, I told the psychiatrist “I’m hearing roaring and buzzing in my ear. Like a train on tracks, and my pulse. It is very loud.” I was too depressed to particularly advocate for myself or care about fighting to tell them something was wrong. I didn’t have that fight left. The medical establishment had broken me down to nothing. I just wanted to die. I mentioned the weird sounds in my head several times, but nobody realized I was hallucinating.
I felt deathly ill, yet I continued to be a rather pleasant patient and I wrote in my journal and read my bible nearly all day long while institutionalized. The head nurse sat next to me one day and said, “What is wrong?” Grateful to talk to someone who I thought I could trust a little bit, I told her I was having incredible pain, very sick, and I was depressed. “I see you read the Bible. Do you believe what you read?” “Well, of course,” I said. “Then do you pray that God will heal you?” “Yes,” I said. “Where is your faith?” Oh no, not one of those…. She said I was not really depressed. After all, I had spent my time praising God and singing throughout the hallways of the hospital because, well, since I was already there I figured I couldn’t do anything that would make me look any loonier than I already appeared…so I threw off my inhibitions and wrote songs and sang them as I desired – my last coping mechanism. She didn’t know why I was even here. I told her I needed to be here so that I wouldn’t hurt myself. She shook her head sadly, or perhaps self-righteously. Even in an asylum I could not find asylum from disbelief.
Result: After I was discharged, I survived over one month of pure hell as I fought with some of the most vivid hallucinations in my life; I lived in terror. Bugs were living inside my head, flying out my left ear and landing on me, swarming me, biting me, making me itch. Police were chasing me as I drove with the windows down in my car to allow as many of the bugs to escape out of my hair and ear as possible. At one point I heard so many fire and police sirens I thought surely the whole town was burning down. I also believed there was another being living inside my stomach. The bathroom exhaust fan sang the most amazing music; everything from jazz to orchestral works, opera, rock and roll…I spent the nights wide awake in terror, but soothed in an odd fashion by the sounds of the fan. It never occurred to me that these manifestations were not real, and I tried to continue working my part-time job, then locking myself in my bedroom away from my roommates, to cope with this unimaginable amount of anxiety.
I knew I couldn’t kill myself, but what was I to do? Friends didn’t believe there were bugs in my head, and they looked at me strangely, which only added to the clinical levels of paranoia I was experiencing. Finally, my body went into shock and I had a mental health breakdown, quite understandable given the above. The EMS picked me up and a few friends went with me to the ER where I forced the doctor to look into my ears for the bugs. He said he didn’t see any. Given how I’d been ignored so many times before, I nearly yelled “LOOK HARDER!” and he looked again. Nothing. “LOOK HARDER-ER! and this time tell me the landmarks of the ear as you pass them!” Nothing. He told me it was in my head this time; I was having a major drug reaction to the Wellbutrin.
I went through a few weeks of Wellbutrin withdrawal, an awful process, and while the hallucination became less vivid, they did not cease until January of 2012, after I made a significant dietary change. Oh, that one of those doctors on that psychiatry team at the institution had actually LISTENED to me when I told them I was hearing odd things. So much suffering may have been avoided.
On the positive side, it was while I was at this institution that God told me I needed to gluten and dairy free. So I did; immediately. I told the nurses I wouldn’t eat until I had spoken with a dietician. It took several days for her to come, and the nurses were encouraging me to eat. “No, I said I will not eat until I speak with a dietician or nutritionist. I’m on a special diet now.” The nutritionist was able to get a standing order in the kitchen for me to receive gluten free and dairy free meals. I won’t comment on taste… 😛 It was with this dietary change that I received the first little hope that diet may help me get relief. I now knew I had to track down a diagnosis of celiac disease.
Mugshot Gastro # 8 confirmed the celiac diagnosis and I’ve been gluten free since 2009. That’s about the only good thing Mugshot Gastro #8 did for me.
Mugshot 9: ER Doctors
Both major hospital systems saw me in the Emergency Room frequently with very odd complaints and intense pain. Both dismissed me as “mental”. Sometimes I was there because my pain was so high, I was experiencing seizure-like jerking of my muscles, I’d not slept for several nights in a row, had tons of neuro complaints, and I needed someone to figure out what was wrong or at least pass me off to someone who knew something or who would try to figure it out! “Don’t just send me home!!!!” I’d say. “DO SOMETHING! I cannot live like this!”
On one visit I didn’t realize I had been having a panic attack for two straight days. I didn’t know I had panic attacks. The nurse treated me with nothing more than oxygen as my pain levels hit 8+. She wouldn’t even help me take my own meds which I couldn’t reach across the room so I tried to use my crutches to hook my bag to get my meds and took them without her “OK” because I’d waited 4 hours for her to tell me if I could take them. Eventually, she walked out of my room and made a circle up by her head to another nurse on duty as they changed shifts. It was the last straw. I was fuming mad; so mad in fact that I decided to complain to the hospital about this nurse’s behavior.
Now I know it was an anxiety attack but still, if a patient is having a panic attack, treat them with some respect…come on. If you’ve never had a panic attack, then thank God. And have some sympathy and RESPECT for those who feel like the world is crashing down on their heads and squeezing them in from every side – they may not know it’s a panic attack so try to rule out all the physical possibilities first. Then gently EDUCATE the patient to help them understand what a panic attack is and geez, some meds to calm it down might be nice too, eh?! Nope, nothing for me. I was sent home.
I hated going to the ER more than anything else. Hours of anxiety and tears following doctors telling me I needed to follow up with my general practitioner who herself was OUT OF IDEAS.
On New Year’s Day of 2011 I made the resolution that I would try to get in as a patient at UNC Chapel Hill’s Center For Functional GI & Motility Disorders, as suggested by a nursing friend who used to work in gastroenterology. I worked to get the referral but it took a few months for me to finally gather my druthers. After all, when I had no insurance I spent hours at this same Center at UNC, with binders of medical history in my lap, begging doctors to consider my case and help me get treatment. After several hours, a woman took the copies of my records, but no phone calls were later returned. I’d wasted my time and precious energy. Now I had Medicaid, so I could possibly get in with a referral. But I was terrified of facing even one more doctor who was a numb-nut; I just didn’t know if I could take it one more time without losing my sanity forever.
By God’s grace, in the summer of 2011, I struck gold. I met my gastroenterologist (actually I think she’s a PA but she is as good as any gastro out there and really knows her stuff), Danielle Maier, and I’ll never forget how she looked me in the eye and told me it wasn’t all in my head. Oh, the wave of mental relief!
SOMEONE BELIEVED ME!!! AND I WASN’T YET CRAZY!!!
Under her care I’ve made significant improvement in my GI health and my mental health as well. I took initiative to care for my health, as I have for years even without help. I was proud of myself for going to UNC even though I was so afraid of another unbelieving episode. I got help! I really got help!
Working with a psychologist who specializes in patients who have GI and motility disorders, we talked about how to cope more effectively and I began a DBT group program which has helped me learn much more productive coping mechanisms. My stress has significantly decreased and I haven’t had an anxiety attack in months.
Mugshot 10: Pain Management
But it wasn’t quite all peaches and cream. I was still having many major neurological complaints and my legs were hurting worse than ever before. I still needed answers! Weeks of phone calls, advocating for myself, and asking around for doctor recommendations, eventually landed me at an orthopaedic surgeon who recognized I probably had CRPS. He sent me to the first pain management doctor, one whose name I hear frequently and who I believe is well regarded. In the meantime, I waited more than a month with terrible pain.
During this first appointment, the doctor wouldn’t see me. In fact, the nurse practitioner told me she needed more neurological testing than I’d already have, plus new MRI’s, and I had to FAIL physical therapy before Dr. W would see me! He’d only see me on the day I was to have a procedure. “WHAT?” I said. “So I drove all the way here, it’s snowing outside and the roads are slick, and I’ve waited months for help while I’m in pain, and you’re telling me I can’t see the doctor today?” It took every last bit of gumption to hold back the tears as my friend who came with me to the appointment comforted me by rubbing my back and advocating for me with the nurse. No help, however. I went home, determined not to go to that doctor again and angry that their practice was going to charge my insurance (Medicare and Medicaid) without me having even seen the doctor – it just didn’t seem right. It had happened again; the door was slammed in my face.
Ok, God. You keep closing doors here. I guess you have something else up your sleeve, something better. Please help me! I just don’t know what to do!
I called MDA, the Muscular Dystrophy Association. Perhaps “Reflex Sympathetic Dystrophy” would be a diagnosis they would support? A nice woman answered the phone and asked how she could help. I told her I’d been diagnosed with CRPS/RSD and gluten ataxia. “Does MDA help folks who have CRPS?” She sounded surprised and told me that she too has CRPS/RSD. No, MDA doesn’t cover it yet but she’s lobbying for it. She asked my age and I told her; we’re very close in age, and she’d never met anyone her age who has CRPS/RSD in person. Over the next few weeks I called her twice and she kindly provided the name of her doctor who was effectively treating her – my beloved Dr. Z, whose praises I’ve sung before and surely will again.
In the past 5 years alone, I’ve seen approximately 40-45 doctors, many of the specialists, yet I’ve only really liked about 8 of them, and only approximately 6 of them would I consider STELLAR doctors who really know how to listen. Many of the docs I saw wouldn’t fit into the “Mugshot” category, but would probably fill the “Indifferent” or “Too busy/prideful to try to find some other doctor who can help me” categories to overflowing. These later two categories, I feel, are akin to neglect and forgetting their doctoral oath to “do no harm,” as the neglect of serious medical complaints IS HARM to the patient.
So is it really any wonder that this nightmare plays on my mind as I try to sleep at night? Would anyone blame me for finding it intensely difficult trust people? Hope not.
How do I work it all out mentally and emotionally?
I’ve learned that God is the only one who really is trustworthy. Every person on this earth will at some point fail me. God won’t. He won’t leave me nor forsake me; He knows my thoughts and my ways; “Surely He has borne our griefs and carried our sorrows” (Isa 53:4); HE BELIEVES ME. And He will make a way. He brought me to the place where I’ve been entirely broken, several times now, yet He saves me just before I die again and again. I thank God for finally leading me to some competent doctors who have been able to put some of the pieces together, and I pray for the cardiologist and new neurologist who are going to be added to the team soon, that God will give them a heart to listen closely, knowledge to know what is wrong, and wisdom to develop the appropriate plan of action. You can pray for that with me, please!
In the end, striving to be healthy and pain-free can be a bit vain because our lives wither like the blades of grass, so I need to focus on making Christ my all and trusting Him with my weaknesses, assured that His power and grace will fill my needs for support so that I can serve Him joyfully regardless of circumstance. One day I will die, yet when I do, I will rise to be with Him in glory forever and the redemption of all these pains will be seen through a clearer sight that no longer requires faith to behold.