Rachel Battaglia

@rachel-battaglia | contributor

When Doctors Claim You're Lying About a Medical Disorder

I want to share my experiences with an audience who can help improve patient care and prevent others from experiencing the frustration I have experienced. But I don’t know who that would be. I’ve had so many encounters with medical providers at my local academic medical health center that it’s difficult for me not to go off on a rant about each horrible experience. My hope is if the providers I have encountered knew how they affected me, they would never behave that way again. Before I go on about the bad, I want to say I have had some good medical providers. For me, a good medical provider is familiar with my medical history but understands I know my history best. I have no control over what other providers document in my medical records, but I am present for each and every doctor’s appointment and medical test I have. I am a good reporter of what is said and done. To me, a good medical provider knows documentation is not perfect and can leave room for error, misunderstandings, inaccuracies and overall lack of documentation. A good medical providercan recognize I am capable of bringing appropriate clinical questions to my appointments and will answer these with thought. Also, a good medical provider tries to engage other medical providers on my team. Most importantly however, a good medical provider does not see me as a difficult patient but rather as someone whose life has been made difficult by a number of medical conditions. For every good medical provider I’ve seen, there are at least 10 bad ones I had to see to get to them.  These providers gaslight me, dismiss me and some have outright harassed me. A vascular surgeon recently told me I have no proof I have a connective tissue disorder, despite the fact I saw a world-renowned genetic expert who wrote a lengthy letter diagnosing me. Never mind the fact that this connective tissue disorder has ruined my life, career and health. It’s caused artery dissections and led to two spinal surgeries. These are very serious and life-threatening aspects of a disorder a vascular surgeon wrote I was lying about because I forced him to return a phone call he asked me to make. I have post-traumatic stress disorder (PTSD) from doctor’s appointments . I have nightmares and flashbacks of things that have happened to me at the hands of bad providers. I have soughtcounseling and have coping skills to help me, but the problem is the trauma never stops. I continue to encounter these providers who would rather accuse me of lying, write evaluations of their impression of my personality and try to sabotage relations with other providers. Imagine watching yourself become slowly disabled. One day in your early 20’s, you cannot keep up with your friends going out on the weekends. You can only go out for a few hours. Then, you can’t go out at all if you want to make it through the work week. Then, you are sleeping more than you are awake. After that, you can’t use your hands properly.  And then, you can’t live alone or make it through the work week or physically support the weight of your own head. All the while, you parade yourself around to medical providers who tell you to walk your dog more, do Zumba, worry less and just stop focusing on your health. There are two options for people like me. One is to do nothing. Fade into nothingness. Give up your house, job, car, friends and ability to support yourself. The other option is to continue to parade yourself around to doctor’s offices hoping you might find a good doctor on a good day that will listen to you and want to help. I don’t believe my symptoms are untreatable or progressive. I’m suffering from being ignored, having egomaniac doctors and just bad medical care all around. The main problem is the things these gaslighting providers have written in my medical records. The accusations I am fine, that I am exaggerating, that I am lying. The insistence my problems are mental or due to my “strong personality.” If you need any proof that half the problem is what bad providers have written in my records, note that each and every time I leave the academic medical health center I am bound to per my insuranceand pay out of pocket for a private physician or a different hospital system, I receive a clear diagnosis from objective testing and a clear treatment plan. Maybe part of the problem is the physicians and providers in the medical system are overworked.  When they see a complex patient on their schedule, they get mad. Perhaps there isn’t enough time to document accurately in my medical records, so they just write what they remember most: Comments about my personality. The system is broken. I should be able to remove these damning logs from my medical records to stop the gaslighting, but physicians are in control of your records and refuse to change notes. Hospital administrators are invested in their physicians and refuse to correct their behaviors. In fact, the hospital administrators I have encountered have been the most evil of all. Recently, a vascular surgery clinic administrator sent me to a different hospital system for a second opinion to “calm down.”  Instead of being reassured, the outside hospital discovered a major artery problem that needs to be addressed with a serious surgery. What was the response of thereferring department? They said I had “Munchausen syndrome.” I ended up ranting and raving more than I meant to, but the unprofessional behavior of some providers, the use of medical documentation as venting and the effort that goes into gaslighting can be life-threatening to some patients and needs to stop. At any rate, it’s interfered with my quality of life, ability to receive appropriate and timely medical care, my financial status from having to pay out of pocket and my mental health . My cause of death may certainly be a doctor who decided I was lying. Leave it to the legal system to determine truthfulness; medical providers should only practicemedicine. Just because the entire medical system is broken does not mean it’s OK to be a jerk and patients should suffer.

The Time It Takes to Live With Chronic Illness

I want others to realize the amount of time it takes to manage a chronic condition. When people ask me how they can help, I want them to give me my time back. Obviously I know you cannot physically wrap up time, put it in a box and give to it me, but I do have some suggestions that can make it seem like you have done just that. First, let me explain how much time illness takes from me. First, there is the time I spend engaging in actual medical care. For example, every two weeks I travel 20 minutes to an infusion center from my place of employment. It takes about 15 minutes to park and walk in. Another hour is spent getting an IV started (my veins are tough to stick from the dehydration I try to treat with the IV treatment). Once the IV is in, it takes two hours for a liter of saline fluid to infuse. Another 5 minutes and I’m walking back to my car. It takes me about 60 minutes to drive home from the center. This sucks almost 5 hours out of my day every two weeks. I have to do this after work because I work for the most unaccommodating employer that ever existed. On top of all that, I do another infusion at home every 3 weeks that takes about 5 hours as well and must occur on a Friday because it leaves me feeling as if I have the flu for 48-72 hours. Then I take meds six times per day (when I remember all of them). Let’s say time spent attempting to swallow pills is 30 minutes per day. The time spent seeking medical advice and treatment is probably the most frustrating type of time to lose to illness. There is no guarantee that this time will reap any rewards, and it’s the most likely type of time to leave me crying. In the past four months I have had an average of two specialty doctor visits per month. These doctors have ordered about 20 hours’ worth of testing (CT scans, MRAs, MRIs, blood tests etc.). Time spent in waiting rooms averages 30 minutes, time spent with doctors’ averages 10 minutes, and time spent calling to get test results averages 2 hours. Seriously. Let’s just assume I spent 3 hours and 20 minutes per week with visits. Let’s also assume this led to an average of 60 minutes of crying per week as well; yup, that’s a truth. I spend a lot of time on the phone with my insurance company. Since I can’t mentally handle typing out all the reasons for this horrible fact, you’ll have to trust me that an average of 2 hours per week is accurate. I spend another 30 minutes per week refilling medications and/or attempting to refill medications. A minimum of time lost to chronic illness on a good week could be about 7 hours and 20 minutes. On a busy week I may spend about 17 hours and 20 minutes on being sick plus 48-72 hours recovering from being sick. How can someone else help? Well, I work about 50 hours per week and spend about 15 hours commuting to and from work. Let’s just average things out to the fact that I spend 80 hours per week (at least 2 weeks per month) on a combination of work, commuting and medical care. I’m a hamster on a wheel here. If I didn’t have to work so much, I wouldn’t need to spend some much time outside of work caring for myself. But I need health insurance, so I need to work, and I need to keep my current job because I can’t risk losing my access to protections like FMLA because I won’t make it another year without missing work to care for myself. How can you give me time back? Come with me. Meet me at the infusion center. Make that 5 hour stint partly a social visit. Come by on a Friday night and keep me company while I’m hooked up to the other infusion. Call me after a doctor’s appointment so that I can at least cry on the phone to someone instead of crying in the car on the way home while Mariah Carey tells me they can’t take that away from me. Help me problem solve my schedule and work around my many appointments to schedule in leisure time. Help me find silly crafts to do or movies to watch on the days I’m stuck hooked up to something and can’t leave the house. It can be incredibly lonely to be sick because of how much time you spend alone at doctor’s offices, alone at the pharmacy, alone having a procedure, alone making phone calls. I don’t need you to hold my hand, but I do need you to help me get my time back.

3 Things Doctors Do When Trying to Get Diagnosis for Chronic Illness

If you don’t live in the world of chronic illness, you won’t understand the evil so many of us experience. There is an unwritten path most of us take to enter into this world. Along this path, there are “rites of passage.” The first is somewhat universal and it’s called “your test results are normal.” This is usually said by your PCP after you went to 25 follow-up appointments and demanded blood work. The PCP may be mentally high-fiving themselves for putting your worries to bed so quickly. Except, you still feel sick. The diagnosis is often then listed as anxiety, depression or chronic fatigue. I once asked if I was born with chronic fatigue and my PCP said that was “ridiculous.” And then I respond that I thought it was ridiculous that she diagnosed me with chronic fatigue when I was following up after that stroke I had at age 32. The next rite of passage usually happens at the “specialist’s” office. This specialist may start off by telling you that they don’t treat chronic fatigue syndrome. Then they will order tests because you didn’t magically evaporate after they tried to ignore you and not make eye contact. Unfortunately, when the tests come back, no matter what the results are, they will be either near-normal or incidental. Once, I was sent for an MRI to look for bulging discs in my c-spine and when I was found to have them, I was told they were incidental. But they ordered the test to look for them because they fit with my symptoms? I digress. Then the specialist tells you to return if symptoms worsen or fail to improve, i.e., they will assist during your autopsy. The last rite of passage is the most insidious. This is when you encounter the doctor who does the most damage to your medical records, your psyche, and your well-being. This is when you push back and demand to be seen and evaluated by a real specialist. You will have filed multiple complaints and your records will precede you. This doctor will engage in gas-lighting. They will write a note in your medical record that will leave you speechless. They will describe you as hysterical, displeased with their assessment and non-existent treatment plan, and accuse you of malingering. They feel it is their personal job to be a CIA agent, investigator and lie detector test all at once.  The exaggerations in their note will impress the biggest liars of the world. For instance, “she has seen an extraordinary number of providers recently.” Yes, an artery dissection, stroke, immune deficiency, genetic condition, and spinal injury do generate some doctors’ appointments. My bad. These are soul-crushing experiences, but to eliminate them would require a few things.  First, a healthy person (and our doctors) must admit that that part of their good health is sheer luck. People with chronic illness are assigned a lot of blame. As in, if we exercise, drank more water, stopped taking meds, were more productive, etc., we would not have a chronic illness. That’s just not true. We are blameless. The only responsibility we have to the development of our chronic condition is that it is happened to us. Second, healthy people and all doctors would need to admit that the amount of effort we put into being well is not related to our treatment response or treatment outcomes.  Again, we encounter a lot of blame. Our doctors and friends will slide in subtle accusations such as “you need to get out more” or “maybe you shouldn’t spend your time thinking about what is going wrong,” etc. On behalf of all people in the world who are experiencing a chronic illness, I would like to go on record and say our efforts do not always matter. Sometimes we are sick of trying and sometimes we are trying too hard. It doesn’t matter, we still have a chronic illness. And third, our doctors and healthy people alike would need to accept that we do not have to be the single sickest person on the planet to feel sad or upset about our own health. Suffering is not a contest. Don’t assume you know what exactly is devastating when you are not the person who is sick. We do not need to be thankful that our hearts are still beating or that we don’t live in a third world country. Our sadness is justified. And we deserve treatment and care. And a wing of the hospital named after us for all we had to put up with. Maybe a small island in our name, too.

Vertebral Artery Dissection: Learning You Can't Control Illness

On December 31st, my beloved cat of 14 years died at one of the best emergency veterinarian hospitals in the country. The veterinarian who had been trying to help Spanky for the past five hours said, “I don’t know what is wrong, but your cat is dying.” As I held my precious cat while she took her last breath, I felt my leg go numb. I couldn’t speak. My head and my neck were throbbing. I couldn’t swallow. I was drooling and snot was running down my face. It felt like I was dying, too. And I kind of was. I had been released from the emergency room earlier in the day; I went in for severe head and neck pain. I was concerned I tore something in my neck. The CT scan was read as degenerative disc disease with some bulging discs. When I returned home from the veterinarian to cry in a ball, the emergency room called and said I needed to come back to the hospital. They made a mistake; I had torn an artery in my neck and the bulging disks were blood clots. Later, I found out I had a stroke during the hours I spent at the emergency vet. I’d like to insert a joke about how my cat, my firstborn, and I were attempting to upstage Debbie Reynolds and Carrie Fischer. As I lay in the MRA machine, I thought it would have been a perfect way to go. But I didn’t die. My dog and I lost our best friend that day and I lived to tell about it. My pets had matching black and white markings; now my dog and our new grey cat look like a mismatched pair of socks. I can’t control anything anymore and I can no longer pretend my life has order. Well wishes and sympathy posts flooded my Facebook wall. It was the most kindness I had ever been shown. It helped me immensely. I felt hope. Maybe now my doctors would take me seriously? Maybe now they would be willing to try all of the treatments I was “not sick enough” to try before? Maybe the diagnosis of vertebral artery dissection would make them pause and look at me and listen. Now I’m too sick. I’m too high risk. Half of my doctors will now acknowledge what I have been saying: I have a vascular problem. There were years of warning signs. The other half refuse to acknowledge I was right and say ridiculous things like, “Anyone could tear an artery if they turn their head too fast.” Really? In the words of my friend, “The human race would not survive if we could turn our heads fast enough to kill ourselves.” I have learned there is absolutely no way to convince someone, even a doctor, to believe you if they do not want to. There will never be enough evidence, enough proof. I never know how my day will start or end. I never know if I will be able to get out of bed. There is little I can control. The picture of me and my matching dog and cat that I proudly showed to the world is gone. I am just like everyone else: imperfect. It’s easy to say “keep fighting” or “you just haven’t found the right doctor.” I appreciate that you still have hope, but for me, I’ve accepted it. When things don’t match, it’s harder to make sense of them. Maybe everything will turn out exactly as I have always hoped, but maybe it won’t. And that’s OK too. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via ehaurylik.

Feeling Sad About New Life With Limitations of Chronic Illness

After years of suffering in silence, I finally fought my way to a diagnosis (Ehlers-Danlos syndrome). At first I was elated. Finally, I could tell people I was sick and give them a name of an illness that described my symptoms. I thought that having a tangible diagnosis would allow me to be who I truly am in public. No more pretending to be home doing homework. No more ducking phone calls and avoiding social invitations. No more fighting accusations or implications that I am lazy. No more questioning of my intentions. No more lying to myself. Part of my diagnosis includes the prognosis that I will not get better. I will never wake up feeling rested. I will never run a 5k (I don’t know why I want to do this, anyway). I was told I can never do any high-impact activities because the risk for fractures and the inability to heal is so great. At first I didn’t really think these things mattered. After all, I no longer had to pretend to join a gym or exercise. But I also can’t actually do these things. I can’t be who I pictured I would be. My world suddenly feels so small. I never got to do an adult hip-hop class! I can never do boxing again. I never thought there was going to be a magic pill that made me feel better. But hearing that I would never get better or, as my doctor put it (and I quote), “You will probably never be who you wanted to be” was beyond devastating. Like, someone needs to invent a new word to describe how I feel. I always thought if I could just find the right diagnosis, the right doctor, the right treatment, etc., I could work really hard and feel better and live a “normal” life for the first time. Nope. Not happening. And I do not want to hear about “what I can do” or my “new normal.” I’m still stuck on what I wanted. I wanted to work long, rewarding hours. I wanted to bounce from work to happy hour. I wanted to stay up past 8:30 p.m. and still be able to function the next day. I wanted to join a 7 a.m. spin class and only make it there once a month. I wanted to work two jobs and come home and do the laundry. My expectations were not too high. What I want you to know is that I am mourning who I wanted to be and I’m not done yet. I wanted to be “normal.” It wasn’t too much to ask. I know people have it worse than me. When I break down and cry because I am so sad, please don’t tell me it will be OK. Tell me I deserved what I wanted to be. Tell me I did nothing wrong. Tell me it’s not my fault. Tell me how hard I tried. Tell me I’m good enough. I always wanted to do something great, something extraordinary. Maybe the challenge is finding out what that thing is within the confines of my limitations. Give me time to mourn who I wanted to be, and I will get back up. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Ehlers-Danlos Syndrome: Chronic Illness Not Taken Seriously

During a conversation with my best friend, she said, “This is all new to me.” Her comment completely caught me off guard. On one hand, I thought, H ave you not been listening to me?! On the other hand, I thought of all of the excuses I give about not hanging out. I am a professional exaggerator and queen of saying ridiculous things. In order to get people to take me seriously about my chronic illness, I’m going to have to actually come out. I’ve struggled with the same symptoms for as long as I can remember. I fainted at my kindergarten Christmas concert. Who remembers that? I made jokes about the way the nurse carried me away. I was trying to make light of my own symptoms by the time I was 5. My mother took me to the doctor and she was told I was fine. I was tested for growth disorders, muscular dystrophy, cystic fibrosis. Every test came back clear. So I made jokes. By the time high school started, I was even more tired and sick. I told people I was skipping school. I mean, I skipped school a few times, but these were few and far between. I was sleeping. I never went to a full week of school after ninth grade. I was not a badass, I was sick. As an undergraduate, there were classes I literally never went to. I emailed in my work. I told people school was so easy that I didn’t even have to go. School has always been easy for me. Do you have any idea how organized and on top of everything you are when you have a limited amount of energy? No action can be wasted. This translates to stellar academic performance. You also have to be creative to come up with constant excuses! Graduate school presented me with the best excuses. I can’t go out because: I was up late studying, I have to write a paper, I have to study tonight, I have to write a paper tonight, school was so stressful that I need to vegetate… I can write a 20-page paper in one hour. I don’t study. I never have. I have learned to remember things after hearing them or reading them only once. It’s a skill I had to learn in elementary school. When you are absent all the time, you have to remember everything you learned in class, without repetition, and do a lot of learning from reading on your own. When the opportunity to move for an internship arose, I jumped on it! I wanted to be able to lay in bed, uninterrupted from 5 p.m. Friday night until 7 a.m. Monday morning. And no one would know! And that’s what I did! The sad reality is that I thought a “year off” from making excuses and being social would heal me for once and for all. It didn’t. I made jokes about becoming a Golden Girl. I called my pajamas “house clothes” because I wear them when I’m in the house. I made jokes about “no shower Sundays.” There are actually a lot of days I don’t shower, because I can’t. If I use up too much energy on showering, I won’t be able to get through my day. I dreaded coming home. At this point, I knew that I could not hide my secret any more. I had tried everything. Diet changes, eliminating everything I’m allergic to (dearest peanuts — I miss you so much), and six months of consistent exercise. In hindsight, I can’t be mad so many people did not take me seriously. If I’m sneezing, I like to say that I almost lost an eyeball. If I have stomach trouble, I like to tell people I pooped my pants. I feel better when I make someone laugh. It is easier to say something and then ease the tension with a joke, at your own expense. So now I’m coming out. I’m sick. And I’m not going to get better. Getting a diagnosis was the hardest thing I have ever done. I went to one doctor and said, “I’m not leaving here without a prescription. I don’t care what it is, you have to do something.” I had to cry. I shelled out hundreds of dollars for medical tests. I went to specialists two or three times per week for over a month. I researched endlessly online. I have Ehlers-Danlos syndrome. I’d really like to make a joke about how I’m falling apart at the seams, but it’s not funny. Laughing will always be my coping skill, but when I get serious, I all I want to hear back is, “I believe you.” The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo by Thinkstock Images