Jennifer P.

@pebblegirl | contributor
I am a mom of three children. All of us have chronic medical conditions. I have hEDS and and my oldest son and I both have celiac disease. My daughter has hypoglycemia. And my youngest son has FPIES and EOE. I spend many hours every week in the kitchen coming up with recipes for my EOE kiddo who currently can only eat 12 foods. I have a special, personal interest in how chronic disease can affect our mental health.
Jennifer P.

The Power of Validation in Your Rare Disease Experience

I’ve spent a lot of my life in medical offices. I’ve seen more doctors than I can count between me, my husband and my children. There seem to be two main types. The first are doctors who can’t see anything wrong on your tests, x-rays or MRIs, so then they conclude there isn’t anything wrong. Or they are baffled and instead of saying they don’t know and sending you off with a referral, they tell you there isn’t anything wrong or minimize your symptoms. I remember one emergency room visit prior to my celiac diagnosis when I was having neurological symptoms. The ER doctor said, “well maybe you just have a touch of the flu,” and sent me home. It is a mistake to believe we fully understand medical science. We have made enormous strides this last century for sure. But to assume that tests show us everything that could be wrong, and if you have negative testing than you have nothing wrong, is flawed thinking. Just because you can’t put a label on it doesn’t mean it doesn’t exist. Doctors who understand this are the second type. These are the doctors who sit down and listen to you. The ones who understand that what you are experiencing is real even if they can’t see the why. The ones who advocate for you and try to help you find solutions. The ones who validate your pain with their compassion. When you are living with rare diseases that doctors haven’t heard of, or if you have experienced rare side effects to medications, it is so important to be validated. Our experience is often made up of people who think we are exaggerating our symptoms or who flat out don’t believe us at all. I remember taking my son to one allergist for his eosinophilic esophagitis. The doctor looked at me after I explained how he would go on long feeding strikes where he would barely eat anything (no solids and only 10-15 ounces of formula a day). His response was, “Yeah, but it isn’t a deadly disease. You shouldn’t make such a big deal about it.” I was floored. Obviously my child has to be in a significant amount of pain or discomfort to not eat for multiple days in a row. No, he isn’t in anaphylactic shock — but what he experiences is real and severe and should be taken seriously. So many experiences like this one have caused me to think the gastrointestinal issues and pain I’ve struggled with for years is mostly in my head. These experiences have made me question the way I feel and have prevented me from seeking help. The lack of validation has made me feel like the medical community isn’t a safe place for me to seek help for my medical issues. I recently went to see a new specialist to be evaluated to see if I have Ehlers-Danlos syndrome. I think he could tell I was bracing myself for the typical response I get from doctors, because without any prompting he said, “I want you to know that what you are experiencing is real.” After a lifetime of hearing exactly the opposite from medical professionals, I almost broke down in tears. Instead of leaving the appointment with self doubt and anxiety, I left with a renewed sense of confidence and strength. It has given me the courage to keep on looking for answers when I had all but given up. Validation is equally important from those friends and families close to us. It is so easy to brush off someone else’s experience. Nothing is more hurtful than a family member who belittles your pain, and nothing is more compassionate than one who decides to take you at your word and offer their support. Invisible and rare illnesses can be hard to believe — but they are real. Our experiences are real. When you belittle us by not believing our experience, it hurts us. There have been times when I refuse to talk about it because I don’t want to be hurt by friends and family who aren’t willing to accept what I’ve experienced as real, or who question the answers I’ve finally found from the medical community. When you decide to take us at our word and listen to our struggles with an open mind, it makes all of the difference. It is helpful to know there are people we can talk to on a bad day who will listen and offer support. Our path can be a lonely one, and having a friend who can walk with us for a bit gives us added hope, courage and strength.

Jennifer P.

The Power of Validation in Your Rare Disease Experience

I’ve spent a lot of my life in medical offices. I’ve seen more doctors than I can count between me, my husband and my children. There seem to be two main types. The first are doctors who can’t see anything wrong on your tests, x-rays or MRIs, so then they conclude there isn’t anything wrong. Or they are baffled and instead of saying they don’t know and sending you off with a referral, they tell you there isn’t anything wrong or minimize your symptoms. I remember one emergency room visit prior to my celiac diagnosis when I was having neurological symptoms. The ER doctor said, “well maybe you just have a touch of the flu,” and sent me home. It is a mistake to believe we fully understand medical science. We have made enormous strides this last century for sure. But to assume that tests show us everything that could be wrong, and if you have negative testing than you have nothing wrong, is flawed thinking. Just because you can’t put a label on it doesn’t mean it doesn’t exist. Doctors who understand this are the second type. These are the doctors who sit down and listen to you. The ones who understand that what you are experiencing is real even if they can’t see the why. The ones who advocate for you and try to help you find solutions. The ones who validate your pain with their compassion. When you are living with rare diseases that doctors haven’t heard of, or if you have experienced rare side effects to medications, it is so important to be validated. Our experience is often made up of people who think we are exaggerating our symptoms or who flat out don’t believe us at all. I remember taking my son to one allergist for his eosinophilic esophagitis. The doctor looked at me after I explained how he would go on long feeding strikes where he would barely eat anything (no solids and only 10-15 ounces of formula a day). His response was, “Yeah, but it isn’t a deadly disease. You shouldn’t make such a big deal about it.” I was floored. Obviously my child has to be in a significant amount of pain or discomfort to not eat for multiple days in a row. No, he isn’t in anaphylactic shock — but what he experiences is real and severe and should be taken seriously. So many experiences like this one have caused me to think the gastrointestinal issues and pain I’ve struggled with for years is mostly in my head. These experiences have made me question the way I feel and have prevented me from seeking help. The lack of validation has made me feel like the medical community isn’t a safe place for me to seek help for my medical issues. I recently went to see a new specialist to be evaluated to see if I have Ehlers-Danlos syndrome. I think he could tell I was bracing myself for the typical response I get from doctors, because without any prompting he said, “I want you to know that what you are experiencing is real.” After a lifetime of hearing exactly the opposite from medical professionals, I almost broke down in tears. Instead of leaving the appointment with self doubt and anxiety, I left with a renewed sense of confidence and strength. It has given me the courage to keep on looking for answers when I had all but given up. Validation is equally important from those friends and families close to us. It is so easy to brush off someone else’s experience. Nothing is more hurtful than a family member who belittles your pain, and nothing is more compassionate than one who decides to take you at your word and offer their support. Invisible and rare illnesses can be hard to believe — but they are real. Our experiences are real. When you belittle us by not believing our experience, it hurts us. There have been times when I refuse to talk about it because I don’t want to be hurt by friends and family who aren’t willing to accept what I’ve experienced as real, or who question the answers I’ve finally found from the medical community. When you decide to take us at our word and listen to our struggles with an open mind, it makes all of the difference. It is helpful to know there are people we can talk to on a bad day who will listen and offer support. Our path can be a lonely one, and having a friend who can walk with us for a bit gives us added hope, courage and strength.

Jennifer P.

Please Understand the Unpredictability of My Chronic Illnesses

I woke up at 7 a.m. today after 10 hours of sleep already feeling dizzy, exhausted, and nauseous. My hands are both swollen, both of my feet are tingling and sore, I have a tight muscle in my neck that causes a persistent headache and facial numbness that will not release (even with physical therapy), and my SI joint is out of place causing significant lower back pain. I am 35 years old, mom to three kids, and I feel like I’m living in the body of someone who is 85. I know without even having started my day that today is going to be rough. I already feel how I normally feel at the end of the day and the day hasn’t even started. I have multiple, chronic, invisible illnesses: autoimmune thyroid disease, celiac disease, hypermobile Ehlers-Danlos syndrome (hEDS), and the latest diagnosis, postural orthostatic tachycardia syndrome (POTS). Living with this particular set of conditions means that life is unpredictable. Maybe I get accidental cross-contact at a restaurant and am out with GI symptoms and migraines for several days. Maybe I’m trying to take my kids to the zoo and my knee goes out of place and I’m depending on a brace and prayers to get back to the parking lot. Maybe I’m standing at a church BBQ and all of a sudden my heart starts racing, I get dizzy and out of breath, and I have to leave early. Or maybe I’m having a good day with lots of energy and we all go on a family hike and it’s wonderful. I never know what to expect, but each day I’m usually playing whack a mole with my conditions — taking care of one only to have another surface. I’ve experienced what most of us with an invisible illness have experienced — the doubt. Medical professionals, friends, and family all have their own version of “don’t you think it’s all in your head?” Let’s address this. All of these diseases have diagnostic criteria of some sort, and even though you can’t see them the way you can see a broken arm, it doesn’t mean they aren’t real. I think what people have a hard time wrapping their heads around is the variability of the symptoms and the severity of the symptoms from one day to the next. I can have a good day, a good week, or even a good month where I’m functioning at a higher level. You may see my house looking a little cleaner and social media posts about the fun things I’m doing with my kids. But there are times when things are debilitating, when my husband is picking up the slack and my mom is coming by to help me clean my kitchen. You also have to understand how we think of our day. Instead of carefree planning, we plan based on how we are feeling. There are some “have to do” tasks every day for me — music lessons for my kids, getting them to school, my part-time job, and making meals.  There are days when that is all I can do. What I do during the day becomes very much a prioritized list. I am often in a place where I know if I have a workday it means my kids will get less attention because I’ll be spending my evening in bed. Every single thing I do usually means I won’t have the energy or ability to do something else. I also know that I often will pay the piper later for doing too much. Yes, I can push myself — I can do more than I physically feel capable of — but it usually ends with me having to give up doing anything for several days. Recently I thought I’d try Pilates again — something I enjoyed doing years ago — so I did a beginner YouTube video for 20 minutes one morning. It took me three full days to recover. I want you to know how hard most of us are working to improve our health. That’s why we go to doctors as much as we do. I will be going back to physical therapy for the first time since COVID locked us down in a few months. I am constantly talking to medical professionals and following their recommendations with exactness in an effort to improve my ability to function in my daily life. No one likes living this way. I want to walk around Disneyland in 90 plus degree weather with my kids and be able to stay hydrated and healthy just by drinking water. I don’t want to be the person always leaving early, always saying no, and always staying home. I remember 10 years ago when my illnesses were less severe, I was the person who judged someone without thinking twice. I guess I’m asking all of you to do something I didn’t do — to not judge us. To see us as people who are doing the very best we can every day.  You may have someone you know who often says no when you invite them to activities. Maybe you know why, maybe you don’t; invite them anyway. You may see someone in your neighborhood who is having a hard time keeping up on their yard work. Maybe you know why, maybe you don’t, but offer them a helping hand anyway. And if one of us opens up about our struggles, don’t doubt us because you saw us at the park with our kids or on a hike with our friends. Believe our experiences. When you see us having a good day, out and about, smiling and energetic, instead of questioning the reality of our diagnosis, celebrate with us. Those days are the days we work for, hope for, and pray for and we celebrate each and every one.

Jennifer P.

Managing and Defeating Anxiety During COVID-19

I’ve struggled with general anxiety disorder my entire life. Some of my strongest childhood memories I have are of being frightened. I would hear about something — like tornados or volcanos or asteroids — and become convinced that thing was my fate. I struggled to sleep and was often plagued by nightmares. As an adult I feel like I’m in a constant, exhausting battle to be in charge of my brain and mitigate the racing thoughts. I want all of you to know this article is written from a place of experience — not of judgment. Please know that what I want to say today is in no way intended to replace medical advice. If you are struggling with anxiety or depression please seek help from professionals. I have — many times. I have spent the last five years working on learning to manage my anxiety better. This has included reading many books, learning to practice mindfulness, regular therapy for several years, managing my other medical conditions better and using some medication with the guidance of a psychiatrist. As I watched the COVID-19 crisis unfold worldwide it felt like the entire world was having a panic attack — granted one that perhaps was justified. Anxiety for me has always stemmed from fear of the unknown and so little was known at first about this new disease. The natural response was to be frightened. But for me I had this thought: “I’ve been mentally training for this for five years.” That isn’t to say I’ve always handled the stress of this pandemic with poise and grace. I have had several days where I have felt unbelievably frightened. But for the most part that fear has not ruled my life the last six months. I wanted to share some ideas that may help those of you who have days or hours of extreme fear in light of the current global situation. 1. Learn to ride the elephant. There is a popular analogy out there of how to think about our brain. Our rational, logical self is the rider and our emotional brain is the elephant. Often in anxiety the elephant takes over before the rider can do much of anything. Once the elephant is out of control, it’s very difficult to reign it back in. Over the last 12 months I have been practicing labeling an anxious thought and visualizing myself as the rider staying in control of the elephant rather than allowing it to control me. It is simple, and maybe a bit silly, but it is also effective. As soon as I hear a scary statistic about COVID-19 or a scary prediction, my elephant wants to stampede! COVID talk is very triggering for me. But it is also part of our current world and as much as I’d like to avoid it, I can’t help hearing about it from time to time. I have had moments I am not proud of where I have said something mean or hurtful to someone during this pandemic because my emotional brain has completely overtaken my logical one. My anxiety often manifests with anger. The last few weeks I have worked hard to visualize myself riding the elephant. It doesn’t mean I’m not frightened sometimes, but it does allow me to stay in charge of my emotional response. 2. Find ways to serve others One of the best ways to help our mental health is to get outside of ourselves. I have found over the last five years that the more I look outward and try to help others the better I feel. Compassion is a powerful emotion and helps me to temporarily find relief from anxiety. Serving during COVID-19 has often felt impossible. I have several friends and family members who are isolated because they themselves are high risk or members of their family are. All I have wanted to do is give hugs, make meals, help clean their homes or help babysit their young children. Being limited in the way we can serve others shouldn’t stop us from trying. Right now what most of us need is more human connection. In the age of social media it is easy to forget that we all benefit from one on one, personal connection. A text, a phone call, a social distanced visit or a small gift are all ways we can show that we care and are thinking of others. Take the time every day to get outside of yourself and think of your circle and who might be needing a conversation or encouraging words that day. There are also many service opportunities that can be done remotely for community causes. Ask around — if you start looking you will find meaningful ways to help 3. Learn more about meditation and mindfulness. I had one therapist talk to me about how meditation is helping your brain tap in to the “calm” response we all naturally had as infants when someone would respond to our needs. This is an area I could be better at. I am a very busy mom of three little ones and taking time out of my day to meditate feels difficult (plus how do you meditate with a 3-year-old using you as a jungle gym?!). But 20 minutes a day of meditation can help you feel more emotionally centered. When I am having a particularly bad day I always make sure to stop and find a way to meditate. Sometimes this means I’m sitting in my car so I’m away from the noise and chaos in my home. In addition to meditation, mindfulness is perhaps the most helpful tool in my anxiety toolbox. Mindfulness is the ability to stay present focused. I have spent months frightened that I’ll get COVID and then the worst will happen. I’ve had to remind myself over and over to stay focused on the present moment. When I’m reading a book to my youngest child I’m trying to make sure that I am 100 percent focused on reading that book. When we are going on a family walk — I try to take in the whole experience with all of my senses and be fully present in that moment. This has given me temporary relief from fear over and over again throughout my day. 4. Change your outlook Earlier this summer I read “The Splendid and the Vile” by Erik Larsen. The book is about Winston Churchill during the blitz in London. Regardless of how you feel about Churchill, it can’t be denied that he had an incredible outlook on the war. He was not going to surrender or accept defeat — no matter how dire the situation looked. I have often had the thought that the world would look very different today if Churchill hadn’t known how to mentally stand strong. I later learned that in his underground war room he had this quote on the wall from Queen Victoria: “Please understand there is no depression in this house and we are not interested in the possibilities of defeat, they do not exist.” I wrote this quote on a notecard and placed it on my fridge. Every time I hear something frightening about COVID I remind myself of the scientists and medical professionals who are “not interested in the possibilities of defeat.” We have conquered much as a human race and we will conquer this too. I also try to think back on my life — how I’ve managed many difficult situations and haven’t given up or given in. All of you are stronger than you think. If you take the time to look back at your life you will see just how strong you really are. We are a community of the Mighty. We are fighters. We are not interested in the possibility of defeat. We can stand strong in the face of our fears. Don’t give up. Don’t give in. Keep being the incredible people you are. We will win this fight.

Jennifer P.

When Mental Health Insurance Coverage Is Harmful, Not Helpful

One year ago, I found myself in the worst mental health crisis of my life. I have always struggled with anxiety off and on. It has come in waves throughout my life, always present in one form or another, but sometimes peaking to a tidal wave’s intensity. This was one of those moments. I tried desperately to use coping mechanisms I had learned in therapy several years prior. But my best practice of mindfulness and meditation only kept me at a bare minimum level of functioning and didn’t seem to make any forward progress against the constant, relentless panic that was threatening to thoroughly swallow me up. My husband works for a university with an incredible hospital and a wonderful psychiatric institute. Our medical insurance coverage is some of the best in the nation and our doctors are similarly top notch. We have been nothing but pleased and blessed with our medical coverage. But for all of the excellence of our medical coverage, our mental health coverage falls short. While our medical coverage is the envy of most of my friends and family, our mental health coverage is archaic and damaging. I am, of course, grateful we even have mental health coverage, but accessing our benefits seems to be designed to harm rather than help. Problem #1. The employee assistance program (EAP). Our EAP is structured with the idea of short-term counseling and that most problems can be resolved within a matter of months. One therapist we saw there essentially said they pride themselves in getting people better quickly. He mentioned all those people we know who sit in therapy for years and never seem to get any better and explained it was his goal to have us out of there quickly. What happens to the patient when the provider has this attitude? Ever since then, I’ve felt there is something a little bit “wrong” with me because I can’t figure out how to cope with my life in a matter of months. I must have very severe issues, or our EAP doesn’t fully understand how lifelong chronic mental health issues actually work. The fact an entire institution can be staffed with providers who don’t understand the core way mental health issues function is baffling to me. So what happens when you are done with the EAP or if an EAP provider thinks you need more help? They refer you to an outside provider. In fact, the only way for me to see an outside provider is if an EAP refers me. I have to go to them first. I have to visit an institution whose thinking about mental health is fundamentally flawed. The benefit of an EAP is that you have access to counseling quickly, usually within a week of calling. That is — on the outside — a good thing. It addresses one of the main problems with mental health care, that it takes months sometimes to see a provider. However, when the providers have this attitude they can fix you in a matter of weeks, I’ve found it overall is a negative. I’m not someone with a problem that can just be “fixed.” I’m someone struggling with a lifelong chronic disorder that needs method, care and periodic check-ins throughout my life to stay in good shape. So, back to me. Last year, I was in bad shape. It felt like I was drowning. My husband and mom were both seriously worried about me. I was worried about me. I knew I needed to see someone — anyone — in the medical profession. I called my EAP and explained I had already received a referral from them for outside care several years ago, but that that therapist no longer accepted our insurance. I asked if they could send me a list of providers so I could find a new therapist. I was referred to someone else. I left a voicemail. I didn’t hear back for several weeks. Problem #2. Someone else is trying to “match” me with a therapist. When I finally got a call back, it was from a very kind woman who assured me my old referral from EAP was all that was needed. She asked me a few questions about my location and the type of therapy I was interested in, and then said she would get back to me when she could with some possible providers I could see. All of the sudden, I felt like I was being set up on a blind date. My control of my own mental health was minimized. I couldn’t just look up providers and find out who was covered by insurance and do my own research on who I’d like to see. I was dependent on a third-party who didn’t even know me to find providers for me. I couldn’t believe our coverage functioned this way. How incredibly archaic. But at the same time, I was desperate to see anyone, so I let the cards fall where they did. She called me back with three potential providers. Two didn’t return my calls. And the third was a major miss. After laying my soul bare, he suggested mindfulness technics I was already using. When I explained I was already doing that, he said, “Well I’m sorry you think all my ideas are stupid.” I was floored. Someone claiming to be a mental health provider being passive-aggressive in this way? Not OK. And it destroyed what little fight I had left in me. What was the point of therapy if I was just going to be attacked? I started to feel like our mental health coverage was designed to be a deterrent rather than a help. I felt like the designers of our coverage had intentionally made it as difficult as possible to access good mental health care so all of us would just give up and save them money. I hope that is not the case, but that is certainly how it made me feel. Problem #3. Lack of easily accessed information. I started searching online about our insurance and in the printed materials I had at home. Surely there had to be a better way to access mental health care. I didn’t want to call the EAP back and get another blind date list. I didn’t want to visit an EAP and see an incompetent counselor. Surely I could go to the renowned psychiatric institute that was housed on the university campus? It wasn’t clear online or in the printed materials what I could access with my benefits. All it said was to visit the EAP and have them refer you to an outside provider if you need long-term care. There wasn’t even a phone number I could call to ask questions. Maybe there was, but in the state I was in, I wasn’t functioning at the level of a bloodhound. I needed easy-to-find information, not hidden information. So, I took a risk. I visited the same-day clinic at the psychiatric institute. It was covered. And so was the outpatient clinic, but getting an appointment there wasn’t easy. In January of 2019, I was experiencing a severe mental health crisis. In February, I visited the same-day clinic designed to help people in crisis. In May, I finally saw a provider my insurance covered. It took me five months to figure out how to jump through all the hoops and get an appointment scheduled. Fortunately for me, I was able to just hold on. I had a great family support system who kept me grounded enough. I had enough coping skills from past therapy to keep me functioning just enough. But if any of those elements hadn’t been there, it frightens me to think of what could have happened. And even more it frightens me to think of what does happen every day in this country. People need to have control of their mental health. We need to be able to see a list of providers. We need to be able to see a provider without jumping through referral hoops. The whole process needs to be streamlined and designed to help someone who can barely get out of bed in the morning. Phone numbers or email addresses of people who can help you find providers and answer questions about care need to be clearly posted. These people need to be trained to answer voicemails and messages promptly and not leave people waiting weeks for a response. Sure, maybe there are some people who just need a little bit of help, but in my experience, if someone is reaching out and searching for a therapist, it’s because they are experiencing sincere, horrific, inner turmoil. To those in the insurance world, take a second look at your process and remember while you are looking at your bottom line, we are fighting for our lives. Give us the tools we need to make that fight a little bit easier.

Jennifer P.

When Mental Health Insurance Coverage Is Harmful, Not Helpful

One year ago, I found myself in the worst mental health crisis of my life. I have always struggled with anxiety off and on. It has come in waves throughout my life, always present in one form or another, but sometimes peaking to a tidal wave’s intensity. This was one of those moments. I tried desperately to use coping mechanisms I had learned in therapy several years prior. But my best practice of mindfulness and meditation only kept me at a bare minimum level of functioning and didn’t seem to make any forward progress against the constant, relentless panic that was threatening to thoroughly swallow me up. My husband works for a university with an incredible hospital and a wonderful psychiatric institute. Our medical insurance coverage is some of the best in the nation and our doctors are similarly top notch. We have been nothing but pleased and blessed with our medical coverage. But for all of the excellence of our medical coverage, our mental health coverage falls short. While our medical coverage is the envy of most of my friends and family, our mental health coverage is archaic and damaging. I am, of course, grateful we even have mental health coverage, but accessing our benefits seems to be designed to harm rather than help. Problem #1. The employee assistance program (EAP). Our EAP is structured with the idea of short-term counseling and that most problems can be resolved within a matter of months. One therapist we saw there essentially said they pride themselves in getting people better quickly. He mentioned all those people we know who sit in therapy for years and never seem to get any better and explained it was his goal to have us out of there quickly. What happens to the patient when the provider has this attitude? Ever since then, I’ve felt there is something a little bit “wrong” with me because I can’t figure out how to cope with my life in a matter of months. I must have very severe issues, or our EAP doesn’t fully understand how lifelong chronic mental health issues actually work. The fact an entire institution can be staffed with providers who don’t understand the core way mental health issues function is baffling to me. So what happens when you are done with the EAP or if an EAP provider thinks you need more help? They refer you to an outside provider. In fact, the only way for me to see an outside provider is if an EAP refers me. I have to go to them first. I have to visit an institution whose thinking about mental health is fundamentally flawed. The benefit of an EAP is that you have access to counseling quickly, usually within a week of calling. That is — on the outside — a good thing. It addresses one of the main problems with mental health care, that it takes months sometimes to see a provider. However, when the providers have this attitude they can fix you in a matter of weeks, I’ve found it overall is a negative. I’m not someone with a problem that can just be “fixed.” I’m someone struggling with a lifelong chronic disorder that needs method, care and periodic check-ins throughout my life to stay in good shape. So, back to me. Last year, I was in bad shape. It felt like I was drowning. My husband and mom were both seriously worried about me. I was worried about me. I knew I needed to see someone — anyone — in the medical profession. I called my EAP and explained I had already received a referral from them for outside care several years ago, but that that therapist no longer accepted our insurance. I asked if they could send me a list of providers so I could find a new therapist. I was referred to someone else. I left a voicemail. I didn’t hear back for several weeks. Problem #2. Someone else is trying to “match” me with a therapist. When I finally got a call back, it was from a very kind woman who assured me my old referral from EAP was all that was needed. She asked me a few questions about my location and the type of therapy I was interested in, and then said she would get back to me when she could with some possible providers I could see. All of the sudden, I felt like I was being set up on a blind date. My control of my own mental health was minimized. I couldn’t just look up providers and find out who was covered by insurance and do my own research on who I’d like to see. I was dependent on a third-party who didn’t even know me to find providers for me. I couldn’t believe our coverage functioned this way. How incredibly archaic. But at the same time, I was desperate to see anyone, so I let the cards fall where they did. She called me back with three potential providers. Two didn’t return my calls. And the third was a major miss. After laying my soul bare, he suggested mindfulness technics I was already using. When I explained I was already doing that, he said, “Well I’m sorry you think all my ideas are stupid.” I was floored. Someone claiming to be a mental health provider being passive-aggressive in this way? Not OK. And it destroyed what little fight I had left in me. What was the point of therapy if I was just going to be attacked? I started to feel like our mental health coverage was designed to be a deterrent rather than a help. I felt like the designers of our coverage had intentionally made it as difficult as possible to access good mental health care so all of us would just give up and save them money. I hope that is not the case, but that is certainly how it made me feel. Problem #3. Lack of easily accessed information. I started searching online about our insurance and in the printed materials I had at home. Surely there had to be a better way to access mental health care. I didn’t want to call the EAP back and get another blind date list. I didn’t want to visit an EAP and see an incompetent counselor. Surely I could go to the renowned psychiatric institute that was housed on the university campus? It wasn’t clear online or in the printed materials what I could access with my benefits. All it said was to visit the EAP and have them refer you to an outside provider if you need long-term care. There wasn’t even a phone number I could call to ask questions. Maybe there was, but in the state I was in, I wasn’t functioning at the level of a bloodhound. I needed easy-to-find information, not hidden information. So, I took a risk. I visited the same-day clinic at the psychiatric institute. It was covered. And so was the outpatient clinic, but getting an appointment there wasn’t easy. In January of 2019, I was experiencing a severe mental health crisis. In February, I visited the same-day clinic designed to help people in crisis. In May, I finally saw a provider my insurance covered. It took me five months to figure out how to jump through all the hoops and get an appointment scheduled. Fortunately for me, I was able to just hold on. I had a great family support system who kept me grounded enough. I had enough coping skills from past therapy to keep me functioning just enough. But if any of those elements hadn’t been there, it frightens me to think of what could have happened. And even more it frightens me to think of what does happen every day in this country. People need to have control of their mental health. We need to be able to see a list of providers. We need to be able to see a provider without jumping through referral hoops. The whole process needs to be streamlined and designed to help someone who can barely get out of bed in the morning. Phone numbers or email addresses of people who can help you find providers and answer questions about care need to be clearly posted. These people need to be trained to answer voicemails and messages promptly and not leave people waiting weeks for a response. Sure, maybe there are some people who just need a little bit of help, but in my experience, if someone is reaching out and searching for a therapist, it’s because they are experiencing sincere, horrific, inner turmoil. To those in the insurance world, take a second look at your process and remember while you are looking at your bottom line, we are fighting for our lives. Give us the tools we need to make that fight a little bit easier.

Community Voices
Community Voices

Why is it that people without celiac try to push gluten free foods onto me?

I was recently diagnosed with celiac. My family keeps wanting me to try gluten free pastas and breads. I am also corn-free so that doesn't help either. I just really do not like the gluten free alternatives. They think that I will like them as much as the bread and pasta that I had before I was gluten free. They don't see how it is different. They also get super disappointed when I don't eat it. We have this chickpea pasta that makes me gag even just thinking about it.
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Jennifer P.

The Power of Validation in Your Rare Disease Experience

I’ve spent a lot of my life in medical offices. I’ve seen more doctors than I can count between me, my husband and my children. There seem to be two main types. The first are doctors who can’t see anything wrong on your tests, x-rays or MRIs, so then they conclude there isn’t anything wrong. Or they are baffled and instead of saying they don’t know and sending you off with a referral, they tell you there isn’t anything wrong or minimize your symptoms. I remember one emergency room visit prior to my celiac diagnosis when I was having neurological symptoms. The ER doctor said, “well maybe you just have a touch of the flu,” and sent me home. It is a mistake to believe we fully understand medical science. We have made enormous strides this last century for sure. But to assume that tests show us everything that could be wrong, and if you have negative testing than you have nothing wrong, is flawed thinking. Just because you can’t put a label on it doesn’t mean it doesn’t exist. Doctors who understand this are the second type. These are the doctors who sit down and listen to you. The ones who understand that what you are experiencing is real even if they can’t see the why. The ones who advocate for you and try to help you find solutions. The ones who validate your pain with their compassion. When you are living with rare diseases that doctors haven’t heard of, or if you have experienced rare side effects to medications, it is so important to be validated. Our experience is often made up of people who think we are exaggerating our symptoms or who flat out don’t believe us at all. I remember taking my son to one allergist for his eosinophilic esophagitis. The doctor looked at me after I explained how he would go on long feeding strikes where he would barely eat anything (no solids and only 10-15 ounces of formula a day). His response was, “Yeah, but it isn’t a deadly disease. You shouldn’t make such a big deal about it.” I was floored. Obviously my child has to be in a significant amount of pain or discomfort to not eat for multiple days in a row. No, he isn’t in anaphylactic shock — but what he experiences is real and severe and should be taken seriously. So many experiences like this one have caused me to think the gastrointestinal issues and pain I’ve struggled with for years is mostly in my head. These experiences have made me question the way I feel and have prevented me from seeking help. The lack of validation has made me feel like the medical community isn’t a safe place for me to seek help for my medical issues. I recently went to see a new specialist to be evaluated to see if I have Ehlers-Danlos syndrome. I think he could tell I was bracing myself for the typical response I get from doctors, because without any prompting he said, “I want you to know that what you are experiencing is real.” After a lifetime of hearing exactly the opposite from medical professionals, I almost broke down in tears. Instead of leaving the appointment with self doubt and anxiety, I left with a renewed sense of confidence and strength. It has given me the courage to keep on looking for answers when I had all but given up. Validation is equally important from those friends and families close to us. It is so easy to brush off someone else’s experience. Nothing is more hurtful than a family member who belittles your pain, and nothing is more compassionate than one who decides to take you at your word and offer their support. Invisible and rare illnesses can be hard to believe — but they are real. Our experiences are real. When you belittle us by not believing our experience, it hurts us. There have been times when I refuse to talk about it because I don’t want to be hurt by friends and family who aren’t willing to accept what I’ve experienced as real, or who question the answers I’ve finally found from the medical community. When you decide to take us at our word and listen to our struggles with an open mind, it makes all of the difference. It is helpful to know there are people we can talk to on a bad day who will listen and offer support. Our path can be a lonely one, and having a friend who can walk with us for a bit gives us added hope, courage and strength.

Jennifer P.

The Food Intolerant Holiday Survival Guide

As the holiday season is rapidly approaching, those of us with celiac disease, eosinophilic esophagitis (EoE), IgE food allergies or other conditions that affect our ability to eat may feeling a profound sense of dread. How do we keep ourselves safe, participate in holiday activities, explain things to well-meaning friends and family and still manage to have a good time? This is my 13th holiday season with celiac disease – my 13th gluten-free Thanksgiving and Christmas. Here are a few survival tips from a veteran celiac holiday partier! 1. Don’t ever expect safe accommodations. In the early days of my celiac diagnosis, I trusted I could explain things to well-meaning family and friends and that would be enough. For instance, Thanksgiving could be a very traditionally gluten-free meal. Turkey is naturally gluten-free as are sweet potatoes, mashed potatoes and gravy if thickened with corn starch instead of flour. One year, we traveled to my husband’s grandmother’s home for Thanksgiving. We had explained my needs beforehand and thought everything would be fine. No go. His grandmother had prepared the turkey with flour — without even thinking — just because it was the way she had always done it. That year, for Thanksgiving, I had mashed potatoes and some gluten-free pie I had brought for myself. Since then, I have learned to check, re-check and triple-check every single ingredient and cooking process that happens at holiday meals. Holiday meals are steeped in tradition, and even the most well-meaning will sometimes do things just out of habit! 2. Take care of the things you care about the very most yourself. I pick several dishes at Thanksgiving that I really want to make sure I can eat, so I volunteer to make those. For me, this includes pie, stuffing and some years, green bean casserole. There are great alternatives out there for almost any diet. Last year, I made my son who has EoE an apple tart out of rice, sugar, salt and cooked apples. He only had two safe foods at the time (rice and apples), and I wanted him to have something special to eat at dinner. Also, make sure to clearly designate an area for safe food. Label it if there is a crowd. Make sure to explain cross-contact and request that the safe food always be dished out with its own utensils onto a clean plate. I always try to dish up my plate first just in case people accidentally forget. Nothing is worse than slaving all day over a gluten-free/dairy-free pie only to have it ruined by cross-contact with other foods. 3. Ignore the nay-sayers (easier said than done). It always seems like there are a few people at every family gathering who don’t want to believe that yes, you really will get sick if you just have a taste of that pumpkin pie — really sick. I’ve heard stories of relatives who think my friends are faking their problems and bother them at holiday meals. What I’ve learned after so many years is to take the time to calmly explain that yes, what I am experiencing is real, and then I try to steer the conversation away from me and my food problems. If this is your first year needing special accommodations, negative attitudes can be really hurtful. I promise it gets better. As time goes on, people get used to your new normal and will be more accommodating. My first few holiday meals with extended family were only moderately gluten-free and I brought most of the food myself. Now they are almost entirely gluten free and-people don’t comment on it any longer. 4. Start new food traditions. Some traditions are hard to keep up with certain dietary restrictions. For example, it is hard to make delicious gluten-free and dairy-free cinnamon rolls, so we no longer have those on Christmas morning. Instead, we are doing a pancake breakfast — something that is easy to do gluten-free, and I can modify to fit various dietary needs. It is so hard to say goodbye to long traditions, but it is exciting to do things a new way and to create new memories with your new normal. 5. Handle all those neighbor gifts with care. If your community is like mine, Christmas is a time for sharing. We receive so many gifts from well-meaning neighbors of things only my daughter — who has no food restrictions — can eat. Even worse is people who do know and try to accommodate, but don’t know enough to avoid cross-contact, so we don’t feel comfortable eating their treat. I’ve always wondered how to best deal with this — should I tell people, or just let it go? Over the years, I got tired of seeing crestfallen faces when I explained that I couldn’t eat whatever treat someone had painstakingly made for me, so now I just smile and thank them. Usually, I end up bringing all of the goodies we can’t eat to friends I know that need a pick-me-up, or to my mom’s house where my extended family likes to gather. We’ve noticed over the years that people figure things out the more they get to know us. We’ve gotten many creative neighbor gifts over the years that are food-free as people have learned about our dietary needs. 6. Give yourself some love and shift your focus. Finding your feet as the newly diagnosed at the holidays is difficult. There is going to be some sadness at seeing all the foods you used to be able to eat and no longer can. That’s OK. That sadness will lessen over time, and as you create new food memories with family and friends. This can be especially hard if you have children with dietary needs. They may be extra upset at family gatherings, so prepare a special treat to bring for them and be prepared to give them lots of love and compassion. Try to shift their focus to all of the wonderful things they can eat and all of the food-free fun found at the holidays. My husband and I have decided over the years to try to stop focusing on the food. He is a rock star at this. He wants family gatherings to be all about the people, reconnecting with loved ones he cares about, even if he is only drinking water while everyone else is eating pie. We try to create as many memories as we can outside of food. Over the years, we’ve found that having food issues has helped to shift our focus to the thing that really matters at the holiday season: our relationships with other people.