Amelia Coffman

@ameliacoffman | contributor
After a year of intensive study on resilience during her Ph.D., Amelia boxed up her papers and moved on to other topics of research, not knowing that what she'd learned about resilience would one day hold the keys to her very survival. Now, she combines her study of resilience with a remarkable story of triumph to bring that same hope and courage to others. Find her at www.ameliacoffman.com.
Darcy Cunningham

When Therapy Doesn’t Always Work for People With Cystic Fibrosis

“Therapy just doesn’t work for me.” “We tried three different therapists for our son and none could help him.” “My therapist didn’t understand what I was going through so I stopped going.” Of course therapy works, I thought to myself, even though my inbox was being flooded with DMs like these. I am a psychotherapist by trade, and I am also the partner of an adult with a progressive terminal illness called cystic fibrosis (CF). I started blogging about mental health in the context of serious illness when I first realized my fiancé’s mental health symptoms were going largely unnoticed by his care team. The psychological burden of living with a serious illness can be quite different from the “traditional” mental health issues I treated in my own practice. For my fiancé, his mental health symptoms manifested as hypervigilance to any changes in his body and subsequent panic attacks when he noticed a change, bone-crushing survivor’s guilt when friends with CF died and an uncanny ability to block out emotions and dissociate from painful conversations. None of these symptoms are typical diagnostic criteria for an anxiety disorder or depressive disorder, so it wasn’t particularly shocking when he was assessed for mental health symptoms using standardized tools (PHQ-9 and GAD-7), and they suggested that he was “totally fine!” What did shock me was the theme of the messages I received in response to my blogs about mental health — therapy doesn’t work for people with CF. Say what now!? Being a therapist (and having been on the other side of the couch, myself) I was dumbfounded by this persistent narrative. I know that therapy works. My derisory reply to these DMs was “try a different therapist…?” For months, I agonized over this issue. I did a lot of research, I talked to a lot of mental health professionals, and most importantly, I talked to a lot of people with CF. I came to two conclusions. Therapy doesn’t work for many people with CF because: 1. A significant amount of time of the therapy session is spent explaining the nuances of the disease to the unfamiliar therapist, reducing the amount of time left for an intervention 2. The most common therapeutic interventions, namely, cognitive behavioral therapy (CBT), only modestly adapt to the lived experience of serious illness. I will explain further below. Generally speaking, CBT focuses on helping clients identify their thinking patterns, so they can modify difficult thoughts through the use of evidence and logic in order to feel better. Difficult thoughts are generally described as thoughts that are either untrue or unhelpful. This is a highly effective modality of treatment for most people. It goes a little something like this: A client with anxiety says to a therapist, “My friends think I’m boring.” The average therapist might encourage the client to examine the evidence for this belief, thinking of times when friends expressed enjoying the client’s company. This might help the client restructure their thought to, “I make my friends laugh,” or “My friends invite me to do things with them.” When the client is able to restructure most of their thoughts on their own, they then start to feel better. Here is another example: a client comes into a session and says, “When my husband is late coming home, I worry that he got into a car accident and I feel a sense of dread.” Again, a typical therapist may help the client challenge this automatic thought by helping them examine the likelihood of it being true (“the chances of that are extremely small!”) or unhelpful (“stressing about it won’t change whether he was in an accident or not!”). The premise of this most common kind of therapy is that changing an inaccurate or unhelpful thought will mitigate painful feelings. Now imagine a client with a progressive terminal illness walks into a therapy session because he has been feeling depressed. He says, “I’m stuck on the thought that my life expectancy is only 35.” Or how about a client with a serious illness who says, “I won’t progress in my career because I miss so much work being sick.” Or maybe a client with a serious illness who says, “I don’t want to date anyone because no one should have to deal with my burden.” Or my fiancé comes into therapy to say, “Whenever I have an itch that won’t go away, I panic that I’m having an allergic reaction to one of my medications.” We can all agree that these are difficult, painful thoughts that can certainly trigger intense feelings of anxiety or depression. But… many of these thoughts may be true (like shortened life expectancy), and some are even helpful (like being hypervigilant to any bodily symptoms, like an itch). So, what is a therapist supposed to do with difficult thoughts like these? Do you try to… put a positive spin on the difficult thought? “Even if you die young you can still have a good life!” “You’ll find the right person one day who won’t care about your illness!” “Anyone could die in a car accident at any moment!” “Try not to panic too much if you have a potentially life-altering symptom!” It suddenly became very clear to me why so many people with CF lamented that therapy doesn’t work. If so many people with CF are unsatisfied with therapy, I can only imagine how many people with other serious illnesses face the same situation. When it comes to the world of serious illness and rare disease, I don’t think the greatest problem in terms of mental health is access to therapy. Heck, I don’t even think the greatest problem is mental health stigma. I think the greatest problem is that most therapists are trained to identify and modify cognitive distortions (those thoughts that are inaccurate or unhelpful) but the “cognitive distortions” of people living with serious illness are often true and/or helpful, even if they’re painful. Therapists get “stuck” when trying to help these clients, and the clients end up leaving therapy unsatisfied and with pervasive mental health struggles. This quandary is why therapy is failing so many people with both serious illness and co-occurring mental health symptoms. Fortunately, there are newer modalities of therapy for which thoughts are not the direct target of change. My personal favorite is acceptance and commitment therapy (ACT), which, instead, focuses on changing one’s relationship with distressing thoughts or feelings using mindful observation, defusion and other acceptance-based strategies. ACT has been studied as a treatment for people with cancer, systemic lupus erythematosus, HIV, multiple sclerosis, epilepsy and cystic fibrosis, among other disease states. ACT is best explained through metaphors. Imagine that all your mental health struggles take the shape of a monster. Your pain, your sadness, your worry and your difficult thoughts suddenly become a monster, and you are in a tug-of-war match with this monster. If you go to therapy to help your tug-of-war with this monster, you will most likely be met with a therapist who teaches you new ways to pull the rope, or a trick for grounding your feet or a way to try to convince the monster to go away. But if you go to a therapist who practices ACT, they will simply teach you how to drop the rope! ACT does not target the thoughts or circumstances that lead to pain and suffering… instead, it believes the struggle with the thoughts and circumstances leads to pain and suffering. For someone with a serious illness whose thoughts and circumstances are unchanging (without a medical miracle), this approach can be much more effective than traditional therapies. The problem is, ask a typical therapist about ACT, and they may not even have heard of it, let alone be trained in it (mostly because it’s so new!). The kind of depression experienced by someone with a serious illness is not the same as the depressive disorders you can read about in the DSM-5. “Feeling down” when you live with a terminal illness is different than the “feeling down” a typical person who battles major depressive disorder feels. It’s neurologically different. It’s hormonally different. And the same goes for anxiety and post-traumatic stress disorder! So why are we trying to treat these unique symptoms with the same old methods? No one should have to “try three different therapists” before they find someone who actually knows how to help. No one should have to spend multiple sessions explaining the nuances of their disease to a therapist, who then spends the next few sessions implementing an intervention that won’t work. It is time we develop disease-specific treatments based on newer kinds of therapy like ACT, and train as many therapists as possible in these treatment interventions. It has become my personal mission to develop new, gold-standard treatment protocols that recognize the unique psychological burdens associated with living with illness. What I want to know in the comments is, are you someone with a serious physical illness who has tried going to therapy? Did it work for you?

Amelia Coffman

A Mental Health Emergency Plan for When Disaster Strikes

Two weeks after Hurricane Harvey made landfall on the Texas coast, many highways and homes in my hometown of Houston remain underwater. Things have begun to shift toward rebuilding in most of the city, but the lack of preparation remains disturbing, especially for those with mental health needs. As another disaster already unfolds in Florida and the Caribbean, how can we advocate for ourselves? In any disaster, basic services are affected. In Houston, 911 call centers prepared for increased calls, but by the first full day of rain, officials were regularly  urging people not to call 911  if their house was flooding unless they were truly in imminent life-threatening danger. I’m sure I don’t need to explain that a mental health emergency probably wasn’t an emergency for the week of rain and rooftop rescues. Emergency rooms were equally overwhelmed, with medical professionals who worked shift after shift, sometimes  pulling in interns who’d never worked a day in an ER, and even medical students , to meet the demand. Some mental health treatment centers in the Houston metro, such as our partial hospitalization programs for eating disorders had to be closed for days, and patients in outpatient treatment had no access to their therapist, psychiatrist and other professionals because travel was impossible throughout the city and many homes and offices were flooded. Medications were not readily available. Volunteers at shelters tried to help evacuees who, for the first time,  couldn’t get essential medications for mental health  conditions like bipolar disorder and schizophrenia, worsening an already vulnerable time for these individuals. Added to this, the  overall need for mental health services skyrockets  after a large-scale natural disaster. Several organizations provide different lists to get you started on a disaster or emergency kit depending on your circumstances. Ready.gov has customized lists for  seniors ,  pets and  those with disabilities . Unfortunately, since Hurricane Harvey hit, I’ve not seen a list that includes meeting mental health needs. A disaster or emergency kit is designed to provide the minimum items an individual or family would need to stay safe during and after an emergency. It’s usually pretty customized to meet each person’s unique needs. We know the basics: be prepared for basic services — water, gas, electricity and internet/telephones — to be off for several days. Have plenty of food and water. Review your emergency plan once a year. But, in addition to planning for the typical outages and reduced ability to travel, it may be essential for someone with mental health needs to prepare for the possibility of cancelled treatment appointments, decreased access to 911, hospitals and emergency rooms for non-life-threatening emergencies, and to plan what to do in unfamiliar and particularly hectic or tumultuous environments. Before an emergency: 1. Create a support system of people you trust This can be family, friends, roommates, co-workers or neighbors. Be sure to include some people in your city, and some people who are out of town in case of a city-wide emergency. Do not depend on only one person — they may be affected, too! 2. Prepare your support network to assist you with your emotional reactions to an emergency or disaster. It may be especially hard to think clearly and process information, and emotions like fear, agitation, anxiety and depression may increase. Ever see a “What to Say to Someone With [insert condition here]” blog post that really resonated with you? Add it to your plan. Send it to your support network, and ask them to save it in case of an emergency. I love these about what to say to someone with  anxiety and depression ,  PTSD and eating disorders. 3. Think about your personal needs. What do you most struggle with when things get chaotic? What is most helpful? Share these answers with your support network. Be specific — even for people who “should know already.” 4. Be prepared to communicate your immediate needs to emergency personnel. Consider situations like calling 911, being at a busy shelter or being at a hospital. It can be much  harder to disclose mental health needs in an emergency . 5. Keep an updated list of your treatment providers’ contact information, your diagnoses and medication dosages. Pharmacies can work with you to get emergency supplies of most medications, but contact information for your professionals will greatly speed up this process. Remember to include a few people from your support system you would want notified (and who could advocate for you) if you were hurt. This is also a good place for a copy of medical and prescription insurance cards. Keep these phone numbers with you in case 911  becomes overloaded . This  template from FEMA might help get you started. 6. Build an emergency kit. Call it a “recovery box,” a “bug-out bag” or a “survival pack,” but think about what you most need to stay stable in a crisis. This isn’t the same as an emergency room or hospital bag — many of the things you might consider there won’t make sense in this kind of emergency. Here’s a great  example to get you started.  Remember to add a small “comfort item” (a stuffed animal, a meaningful picture) and a small amount of medications, including those that are as-needed. 7. Prepare for pets. If you are like me and you have a pet that can comfort you when almost no one else can, be sure to think about them, too! In addition to food and water, at a minimum, bring current vaccine records and your veterinarian’s contact information so your pet could be boarded or stay in a “pet-friendly” hotel. During an emergency: 1. Speak up for your needs. Don’t be afraid to explain to first responders, humanitarian volunteers, family or friends what you need given your individual circumstances. Do you urgently need medication to prevent symptoms of  bipolar disorder  or schizophrenia? Do you require a quiet environment to keep panic attacks at bay? Make those needs known. 2. Find something, somewhere to be grateful for. When the world is falling down around you, figuratively or literally, it’s surprising how much it can help to push yourself to finding something good in the situation—somehow, somewhere. 3. Consider turning off the news. Watching the news or reading Facebook stories all day can make the best of us anxious during and after a disaster. Plan ahead for someone to send you essential information. Plan for how you will decrease distractions in a chaotic environment. For example, if you are used to listening to music, what will you do if electricity isn’t available? 4. Be flexible. Emergencies are always unplanned, and are often unpredictable as they develop. Plan for your plan to change, and be ready to adapt to quickly changing circumstances. Have back-up plans arranged with your support network. What if you couldn’t escape with needed prescriptions? What if cell service were interrupted? After an emergency: 1. Look for what you can control. In the midst of many things that are far beyond your control, what can you control? Check out this great list of  75 things you can control now . What would be on your personal list? 2. Reestablish consistency. I don’t know anyone who operates at their best when there isn’t some level of consistency and stability. This is often especially true for those with mental illness. Can you eat or sleep at the same time you usually do? Talk to someone you always talk to? Listen to a song, meditate or say a prayer? Look for something, no matter how small. 3. Continue self-care. I’ve heard this so many times it makes me cringe a little to say it again myself, but if there’s ever been a time to prioritize self-care, this would be it. Eating and sleeping are a must, but check out this fabulous  list of 101 self-care ideas — I bet you’ll see some you haven’t thought of in awhile! 4. Find support. Your normal treatment schedule could be interrupted, and parts of your treatment team or support system may be unreachable. You may need to reach out to friends, family, uplifting social media groups or a phone or text hotline. You can call a  24-hour helpline , or contact the  Crisis Text Line  by texting “START” to 741-741. Remember that some people you normally rely on may be dealing with their own needs, and you may have to be more creative than usual about how you reach out. We want to hear your story. Become a Mighty contributor here . Photo via CNN Facebook page.

Amelia Coffman

Why the ER Can Be Dangerous for Patients With Eating Disorders

Late into the first Wednesday night of 2017, yet another emergency room doctor said the unemotional words my wife and I had learned to fear, “You’re OK, we can send you home now.” My wife insisted that we see a cardiologist, but the doctor grimaced before telling her he was busy dealing with “things that were actually important, like heart attacks and strokes.” Just over 24 hours later, two medical professionals at the Medical Center for Eating Disorders in Houston, were racing the clock to save my life. But nothing had changed in those 24 hours. And I didn’t have an eating disorder. Dr. Edward Tyson, MD, whom I’d only met moments before, quickly tore off the pink printout from the ECG, and ran out of the room with a desperately worried look on his face, already dialing his phone. Still lying on the exam table, I had trouble making sense of everything that was happening, and soon it all blurred into a hum of white noise around me. I remember pleading, “Just keep me safe. Do whatever you have to do to keep me safe.” I was terrified that these professionals, specialists in the medical complications of eating disorders, had nothing to offer me. Still, something about them calmed me. They seemed to understand what was going on much better than most of the doctors I’d seen over the past three years, during which my unexplained and severe mouth ulcers had continually worsened. Now, I wasn’t able to eat or drink without excruciating pain, and my body had become dangerously malnourished. Jennifer Nagel, PA-C tried to calm my wife and I, while quickly explaining I needed to fly to Denver, Colorado immediately to be treated on a specialty floor at a medical hospital — the only one of its kind in the world. As soon as I heard “Denver,” I knew exactly what she meant. “ACUTE? You mean ACUTE?” The full significance of the danger I was in wrapped itself around me, like a blanket that very suddenly becomes too warm. “Are we really at that point?” “We think you need to be admitted as soon as possible. You are at an incredibly high risk for a heart rhythm called torsade de pointes, and sudden death.” Located on a dedicated medical unit at Denver Health hospital, patients at the ACUTE Center for Eating Disorders benefit from the extensive support of a major medical hospital, while the world’s leading experts provide life-saving medical stabilization. I have been familiar with ACUTE for many years, because more than 10 years ago I lived through severe anorexia and bulimia myself. I now live a life where food, weight, exercise and my body are not things I worry about. Several years ago, I decided to stand by the professionals that helped me recover from my own eating disorder, and share my story. I now have the honor of sharing the hope of full recovery with students, health professionals, community members and patients and families at eating disorder treatment centers. I certainly never thought that specialists in the medical complications of eating disorders, or the only medical eating disorders hospital unit in the world, would now come stand beside me, and save my life. I called ACUTE immediately, and spent most of January in a hospital room in Denver being cared for by their incredible team, before I returned home to complete my recovery. I am proud to say that due to the skill and quick decisions of the doctors at both Houston’s Medical Center for Eating Disorders and ACUTE, on May 6th, I gave my first speech since being hospitalized — stronger than ever. But what did the numerous emergency department doctors that saw me throughout December miss? More importantly, why? They missed how unreliable the appearance of a patient can be. Physicians rely on the overall alertness of their patients in addition to objective tests to construct a picture of “how ill” that patient is. Unfortunately, patients who are severely malnourished, or who struggle with any of the eating disorders, can seem deceptively healthy when they are in grave danger. They missed how quickly malnutrition can devolve from “fine” to life-threatening. Laboratory values that are within normal limits, or that can be quickly corrected to normal, are not typically cause for concern in an emergency department. However, normal lab values in a severely undernourished body may be quite ominous. They missed how serious things already were. My ECG in the emergency department should have been very concerning. My potassium level, which had continued to drop despite increasingly aggressive replacement, should have been concerning (low potassium is a strong risk factor for dangerous cardiac arrhythmias). Add to that my history of surgery due to a congenital arrhythmia, and we had the perfect storm for sudden death. They missed how dangerous it would be for me to start eating again. Most eating disorder professionals now recognize the catastrophic refeeding syndrome as a concern in severely malnourished patients, but few are equipped to determine at what point of malnourishment expert inpatient medical treatment should begin along with refeeding. They missed their own cognitive bias. They didn’t know what they didn’t know. Standard emergency department treatments (such as rapid infusion of IV fluids) are, more often than not, dangerous in patients with severe malnutrition. Going to an emergency room calms many of our fears for our (or our loved one’s) medical situation. I’m not sure it should. A non-specialist medical doctor cannot be expected to handle the vast complications of a severely malnourished patient, or anticipate how quickly that patient can deteriorate. And unfortunately, the dire complications of severe malnutrition often do not correlate with how sick a patient looks to an untrained eye, in person or on paper. A patient with cancer, epilepsy or cystic fibrosis is automatically sent to a specialist for evaluation and treatment. Though still very few and far between, specialists in the medical complications of severe eating disorders and malnourishment do exist, and they are capable of deciding on a case-by-case basis if emergency medical treatment is needed. Comprehensive, specialized medical treatment should not be a last option after other medical hospitals have failed. I was very lucky that someone suggested turning to Houston’s Medical Center for Eating Disorders, and that I was quickly admitted to ACUTE. But my being alive today should not be based on luck, when we have these resources and when doctors can receive additional training — because that means others in our cities and our world are not so lucky. Things don’t always turn out like you plan. I never expected to again be a patient of anyone with “eating disorders” on their business card. But the ACUTE Center for Eating Disorders not only dealt skillfully with the medical complications multiple other emergency department doctors had missed, they also worked with specialists throughout Denver Health for a solution to the mouth ulcers that had me bouncing back and forth between other professionals for years. I take one new medicine now that I’m home. And I live life again. If you or someone you know is suffering from a severe eating disorder, contact the ACUTE Center for Eating Disorders at (844) 649-8844 to learn more about their program, to receive a free medical assessment or to begin the admission or referral process. This piece originally appeared on the ACUTE Center for Eating Disorders’ LinkedIn. If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237 . We want to hear your story. Become a Mighty contributor here . Thinkstock photo via Chad Baker/Jason Reed/Ryan McVay