Far too often grappling with a chronic illness is a fight not only for your health but also for your dignity. Many times the medical community can unintentionally compound the pain of those suffering by minimizing their experience or even invalidating them entirely. It can take years or even decades for some patients to get an answer to what is plaguing them, and for some the diagnosis never comes at all. Here are some actual responses I have encountered from doctors in my 15 year journey to getting my diagnosis of Lyme disease.
“Is it possible you’re feeling depressed from all the weight you’ve put on this year?”
Earlier this year when my symptoms seemed to be worsening with greater intensity than ever before, I went back to the drawing board so to speak and decided to pursue fresh eyes on my case. One of the doctors I visited listened for a couple minutes as I described my worsening pain and fatigue and how totally disabling they had become, and offered this remark in response. I had mentioned when describing my concerns that I had put on 30 lbs in the course of 6 months, and I had intended to offer that as a symptom pointing to the seriousness of my worsening condition. For the rest of the appointment this doctor consistently circled back to my weight not as a symptom, but in his opinion the root cause of all of my health issues. When I asked about further testing for Lyme disease, I was met with questions about my diet. When I described my increased dependence on my cane, I was questioned about my exercise routine. I left the appointment with handouts on why this doctor believed most everyone should maintain a vegan diet (despite the fact my history of seizures requires a high protein diet to manage, as noted by my neurologist right there in my chart,) a referral to a nutritionist, and a prescription for antidepressants he said could help me “jumpstart” my efforts to get up and moving more. Sadly, this is a common story in medicine today. Patients with higher BMIs are often written off as inherently unhealthy, and their symptoms attributed simply to poor diet and lifestyle choices rather than considering their weight may itself be a symptom of a larger underlying problem. Because of the additional shame of feeling blamed not only for their weight management issues but their worsening health as well, overweight patients are more likely to stop pursuing answers entirely, as its easier to avoid the uncomfortable and fruitless appointments rather than continue to be subjected to the relentless suggestions their weight is the real problem.
“Sometimes miscarriages simply happen. It’s the body’s natural way of stopping a pregnancy that would likely not have been viable for one reason or another. When they happen early, there usually isn’t a real ’cause’ other than that.”
To date I have had a total of 7 miscarriages, most all of them in early pregnancy. I was eventually able to have a couple doctors consider more serious possible root causes, but only after that number began to climb, and more often than not my concerns were met with a regular insistence that “these things happen.” I’ve had more statistics about the commonality of miscarriage offered to me than I can possibly recount. Pregnancy loss is an emotional experience in and of itself, and having multiple unexplained miscarriages adds an additional dimension of confusion, guilt, and anxiety to grapple with. In the end my pregnancies were marked as “high risk” because of my history of losses, but until getting my Lyme diagnosis (and until discovering this year that I also carry the MTHFR genetic mutation,) no definitive explanation was ever offered for my multiple losses. I approached every pregnancy with the very real anxiety that there may very well be some unseen force set against our success, but ultimately I felt invalidated by the medical community in my search for answers
“I see you’ve had a baby recently. Feeling tired is to be somewhat expected with young children at home. It’s not usually a sign of disease so much as the normal wear and tear of life. There’s no prescription for being tired, I’m afraid.”
At this particular visit my son was already well into toddlerhood, and we were long past the phase of sleepless nights. My concerns about my chronic fatigue were consistently repeated back to me as “feeling tired,” a horrible minimization of the harrowing ordeal I was actually enduring at the time. The more I inquired about options to consider, like testing for a hormonal imbalance or a thyroid issue, the more I was reminded that being tired is just a part of adulthood and doesn’t require medical attention. When I finally became frustrated enough at feeling so unheard and deeply misunderstood, my emotions took over and I began to cry. It was at this point I was given a postpartum depression questionnaire and asked a series of questions about whether I was feeling too overwhelmed by motherhood. I left the appointment with only a referral for counseling and pamphlets on postpartum depression, and a light hearted anecdote about why so may parents need their morning coffee.
“The symptoms you are describing sound like textbook depression. When there are regular complaints of fatigue and even pain, but without any sort of obvious medical explanation, it’s almost always the symptoms of what we call major depressive disorder.”
In the earliest years of my illness, I was most almost exclusively brushed off as depressed, likely because I first took ill as a teenager. Struggling to get up and go to class? Typical teenager. Sleeping 12-13 hrs at night and still need a 1-2 hr nap? Depression is common in teens. To this day, if you were to look at my medical records, you would see under conditions a note that says ” Major Depressive Disorder.” Even into adulthood, my doctors mainline approach to treating the fatigue and pain that plagued me was to offer antidepressants. When I was finally able to get a possible diagnosis of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and later Fibromyalgia as well, the most commonly recommended form of treatment I was given was still antidepressants. Admittedly antidepressants were sometimes able to take the edge off the fatigue, sometimes even giving me periods of near normalcy for weeks or even months. But inevitably the symptoms always returned, and were worse than before. Each time I questioned whether these medications really were the answer, and I was offered either a dosage increase or a new medication to try. By my current count I have been on no less than 7 antidepressants, none of which ever brought more than temporary and partial relief. This story is all too common in the chronic illness community, and can leave patients doubting their own sanity as their symptoms worsen. Even the best self advocates can begin to doubt themselves when confronted with the same suggestion of depression so many times over, and without another clear answer to point to in its place. Undoubtedly my own rock bottom moment was when I spent hours in the middle of the night researching modern electro shock therapy treatments, because I was so desperate to be free of these symptoms and antidepressants simply weren’t solving the problem. I was so determined to get well that I was actually considering making an appointment to discuss ECT, or even a short term commitment to a mental health facility, because I figured if they were so insistent this level of pain and fatigue was caused by depression alone, then it was worth trying absolutely anything to be free of it once and for all. It was soon after reaching this low that we learned I had Lyme disease, and I thank God everyday He saved me from going down that rabbit hole any further. It gave me a harrowing level of insight into just how much doubt these repeated suggestions of depression can place in the mind of even the most well researched of patients. Sadly, many patients never get their true diagnosis, and when faced with the idea of an incurable prison supposedly only of their mind’s own making, many opt to end their own lives instead.
“The test results show no medical explanation for the level of pain you are describing. At this point it’s very likely these symptoms are psychosomatic and the best course of treatment is counseling. The pain may feelreal, but the roots simply aren’t physical.”
I was pregnant with my second son Jack and had just undergone a painful and incredibly scary ordeal with pericarditis, a serious infection of the sac around the heart. I was hospitalized for a week, and then was released to a strict bedrest regimen for the remainder of a difficult high risk pregnancy. The infection itself had cleared with treatment, but the horrible pain I was experiencing was still beyond what I could manage. I was desperate for answers, as Jack was a miracle pregnancy after a long struggle with multiple miscarriages, and I didn’t want anything to risk his arrival. My pain was so unbearable that I had to be driven to and from my appointment, since I couldn’t safely drive myself. I left the appointment with no answers, and only a referral to counseling. A more sympathetic doctor I saw over a year later revealed physicians notes from that visit suggesting that perhaps I had “enjoyed” the added attention and caring concern I received through my hospitalization, and was looking to extend those attentions by feigning continued symptoms. I was later able to have these notes removed from my record, as they could potentially have unfairly biased future doctors who evaluated my case through the years. Yet the emotional scars of the whole ordeal still remain. In fact, I was too scared to immediately seek emergency room care on multiple occasions in which it was most definitely warranted, because I was terrified to be further labeled as either an attention seeker or painkiller addict – or both. The message had been so deeply internalized: if you come too often for things we can’t clearly enough explain, one of these days you will end up committed for psychiatric care. I often wonder if we could ultimately have found our answers sooner if I hadn’t have been scared away from fighting too hard for myself and my very real symptoms.
For 15 years I have been suffering with worsening symptoms of my Lyme disease, and in that time I have seen more doctors than I can count. It’s difficult sometimes to explain just how it could be possible for a diagnosis like Lyme to go unsolved for so long, especially someone regularly seen by so many physicians – but my story is far from rare. My hope is that sharing these experiences can help reveal some of the inherent obstacles people with invisible illnesses face to getting the answers they deserve. My experiences are far from unique, and are sadly indicative of some of the very real biases in the medical community that can keep patients from their true diagnoses for years, or even for life.
After walking away from a successful portrait photography business, Stephanie launched her personal brand, The Joy Parade, for which she now is a full time author, speaker, and blogger. She shares her unique style of whimsical photojournalism paired with her humorous and heartfelt musings on life, faith, pain, and parenthood. You can see more of her work at www.thejoyparadeblog.com