Adele Espy

@adele-espy | contributor
I struggle with many chronic conditions (physical and mental) that affect me every day. I have a service dog to help mitigate my disabilities. I have a small crocheted hat business and I train dogs on the side. Most of my days are filled with doctor's appointments and resting so I can go to all my appointments. I'm lucky to have such a supportive family and a few great friends.
Community Voices

New to the group!

I’m a parent of an adult son dealing with anxiety PTSD depression, late 20’s and lives/works across the country, in therapy. How can I best help him?
#Parenting

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Community Voices

New to posting

Hi I am Tiffany- I am new to posting, I definitely enjoy reading and replying to posts. I live with Depression, social anxiety disorder, disordered eating, and stimulant addiction. My social anxiety causes isolation....I am single and my kids are grown...I live alone. I am looking for suggestions to help with the loneliness...some connection, it sucks and just makes the depression worse sometimes. Maybe just posting will help? I haven't navigated the mighty app too much so any suggestions would be great, thank you!

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Community Voices

Quick Tip Thursday: Try To Do Physical Activities During The Coolest Times Of The Day During The Summer

<p>Quick Tip Thursday: Try To Do Physical Activities During The Coolest Times Of The Day During The Summer</p>
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Community Voices

Imagine you have time (and the money) to take a road trip. Where would you go?

<p>Imagine you have time (and the money) to take a road trip. Where would you go?</p>
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Community Voices

My calendars uplifting quote for the month of July. Definitely something my heart and soul needed!

<p>My calendars uplifting quote for the month of July. Definitely something my heart and soul needed!</p>
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Adele Espy

When Your Chronic Illness, Gastroparesis, Means You Can't Digest Food

I have severe gastroparesis and intestinal dysmotility, caused by Ehlers-Danlos syndrome (a genetic connective tissue inherited disease). Ever since 2010, I have not been able to digest food without throwing it up. After exhausting all medications to help me digest food, I had an ileostomy surgery in hopes that my chronic severe constipation would allow my intestines and stomach to work better. The ileostomy relieved the incredibly painful intestinal and colon pain, but it didn’t help my stomach or intestines. In 2019, I had a feeding tube inserted into my upper intestines and was told to not eat by mouth. This helped for a short time, but not without a different kind of stabbing intestinal pain. And it didn’t stop the constant vomiting of acid and bile or any tiny sips of water I drank to wet my dry mouth. In 2021, my gastroenterologist had a central catheter placed in my chest and switched me from tube feeds to intravenous nutrition (TPN: total parenteral nutrition), and inserted a gastrostomy tub e into my stomach for draining acid and bile and whatever liquids I drink. I am being nourished, but I still can’t eat food. I miss being able to enjoy food. I grew up in a foodie household. My mom loves quality cooking. She bakes everything from scratch, and she cooks dinner every night from scratch. She can smell a brownie and know whether it was a box mix brownie (which she will not eat despite her love of chocolate), or a homemade brownie. She is the master of chocolate chip cookies and has baked a batch at least once a week for her entire life, starting at age 12 when she developed a love for baking. She packed gourmet lunches and snacks at school through my senior year in high school. I was fed quality, natural, organic, homemade, local delicious food all my life. In my family, food is love. We have a summer house on a lake in New Hampshire where many of our closest friends live during the summer. It is one of eight camps, and together we prepare and enjoy extravagant meals throughout the season. We have gatherings with everyone and we all cook and bake amazing dishes to be shared. The owners of the houses stand up and toast the now-deceased gentleman who is the reason we all have this amazingly supportive community on the lake. Food is tradition, it is an expression of love, and it is a way we bond and socialize. Ever since I lost the ability to eat, I’ve struggled with my relationship with food and these dinner celebrations. For years I simply did not go to these events. But I miss the social aspect that food creates. I still bake and cook and prepare the meals with my mom, because I can’t stand missing out on cooking and baking with her — it is one of my favorite hobbies. I miss sitting around the table and talking, laughing, and joking with friends and family. I tried to go to dinners for years, but would often wind up in the neighbor’s house, puking in their bathroom. Then I tried attending the dinners and just not eating, but it was torture for me. I wanted to eat the delicious smells I was sensing. I felt so sad every time I watched someone spoon another delicious bite into their mouths and sigh with enjoyment. Then the dessert would come out, and I usually had made it, so I wanted to try it so badly. Most of the time, these dinners ended in me taking home leftovers and dessert, eating in private and puking all night. The leftovers and dessert were not what I was craving though. I was craving the love, the connections, the togetherness, the camaraderie, the celebration, the satisfaction, the peace, the joy, and the jovial conversations. I miss the experiences that food often goes along with. It was too hard for me to sit at a table and watch others eat, so I stayed home and missed out on all of the socializing and connecting that food is associated with. Not being able to eat food doesn’t just impact me on a nutritional level; it hurts my soul to not be able to be a part of the group. It is finally getting a little easier for me to sit with people who are eating, after years of not being able to join in, but it’s incredibly hard, and takes a lot of willpower to resist the tempting smells, and the delicious-tasting food. I’ve been practicing sitting at the table while people eat by having lunch with my therapists and doctors, and other providers who work in the building where I receive psychiatric services for post-traumatic stress disorder (PTSD). Each day they have a home-cooked lunch prepared by one of their staff/providers. They all hold hands and bless the meal, and thank the cook(s). I’ve helped the cook in the kitchen twice in the last two months, and it has been so healing to be around food, cooking with intention, and being able to join them at the table while they eat, and be a member of the conversation. Both times I have sat with them at lunch it has been very hard on me mentally. I dissociated, I panicked, I froze, I served myself something little and poked at it – wishing I could eat it, but knowing full well that it would make me sick if I did. But I’m getting better at tolerating being at the table, and being around delicious food without becoming overcome by grief and frustration. As this summer begins, and the meal gatherings and celebrations commence tonight for Memorial Day, I feel more prepared than ever. I know that it is the connection, love, conversation, and joyful energy I long for when we have gatherings. It is not just the food I miss out on. I plan to attend at least a short period of time at as many dinner celebrations as I can tolerate. I need to set myself up for success so that I don’t become overwhelmed and devastated, or fixated on when I can sneak leftovers to my room to eat in privacy, and then pay the price in the bathroom over the toilet bowl. I’m focusing on the people, the conversations, the present moment, and the energy that a gathering of loved ones creates. Since I can drain my stomach contents, I am able to drink clear liquids, so while everyone else is enjoying the food, I can enjoy as many cups of apple juice, ginger ale, seltzer water, and ice chips as I want. It’s not the same as eating food, but it’s as close as I can get. I no longer want to hide from social gatherings in an attempt to avoid the temptation to eat food. This year I am stronger than ever and ready to tolerate the devastation of not being able to enjoy the food, because I will be filled with a deeper satisfaction that comes from being in the presence of those who I love.

Adele Espy

When Your Chronic Illness, Gastroparesis, Means You Can't Digest Food

I have severe gastroparesis and intestinal dysmotility, caused by Ehlers-Danlos syndrome (a genetic connective tissue inherited disease). Ever since 2010, I have not been able to digest food without throwing it up. After exhausting all medications to help me digest food, I had an ileostomy surgery in hopes that my chronic severe constipation would allow my intestines and stomach to work better. The ileostomy relieved the incredibly painful intestinal and colon pain, but it didn’t help my stomach or intestines. In 2019, I had a feeding tube inserted into my upper intestines and was told to not eat by mouth. This helped for a short time, but not without a different kind of stabbing intestinal pain. And it didn’t stop the constant vomiting of acid and bile or any tiny sips of water I drank to wet my dry mouth. In 2021, my gastroenterologist had a central catheter placed in my chest and switched me from tube feeds to intravenous nutrition (TPN: total parenteral nutrition), and inserted a gastrostomy tub e into my stomach for draining acid and bile and whatever liquids I drink. I am being nourished, but I still can’t eat food. I miss being able to enjoy food. I grew up in a foodie household. My mom loves quality cooking. She bakes everything from scratch, and she cooks dinner every night from scratch. She can smell a brownie and know whether it was a box mix brownie (which she will not eat despite her love of chocolate), or a homemade brownie. She is the master of chocolate chip cookies and has baked a batch at least once a week for her entire life, starting at age 12 when she developed a love for baking. She packed gourmet lunches and snacks at school through my senior year in high school. I was fed quality, natural, organic, homemade, local delicious food all my life. In my family, food is love. We have a summer house on a lake in New Hampshire where many of our closest friends live during the summer. It is one of eight camps, and together we prepare and enjoy extravagant meals throughout the season. We have gatherings with everyone and we all cook and bake amazing dishes to be shared. The owners of the houses stand up and toast the now-deceased gentleman who is the reason we all have this amazingly supportive community on the lake. Food is tradition, it is an expression of love, and it is a way we bond and socialize. Ever since I lost the ability to eat, I’ve struggled with my relationship with food and these dinner celebrations. For years I simply did not go to these events. But I miss the social aspect that food creates. I still bake and cook and prepare the meals with my mom, because I can’t stand missing out on cooking and baking with her — it is one of my favorite hobbies. I miss sitting around the table and talking, laughing, and joking with friends and family. I tried to go to dinners for years, but would often wind up in the neighbor’s house, puking in their bathroom. Then I tried attending the dinners and just not eating, but it was torture for me. I wanted to eat the delicious smells I was sensing. I felt so sad every time I watched someone spoon another delicious bite into their mouths and sigh with enjoyment. Then the dessert would come out, and I usually had made it, so I wanted to try it so badly. Most of the time, these dinners ended in me taking home leftovers and dessert, eating in private and puking all night. The leftovers and dessert were not what I was craving though. I was craving the love, the connections, the togetherness, the camaraderie, the celebration, the satisfaction, the peace, the joy, and the jovial conversations. I miss the experiences that food often goes along with. It was too hard for me to sit at a table and watch others eat, so I stayed home and missed out on all of the socializing and connecting that food is associated with. Not being able to eat food doesn’t just impact me on a nutritional level; it hurts my soul to not be able to be a part of the group. It is finally getting a little easier for me to sit with people who are eating, after years of not being able to join in, but it’s incredibly hard, and takes a lot of willpower to resist the tempting smells, and the delicious-tasting food. I’ve been practicing sitting at the table while people eat by having lunch with my therapists and doctors, and other providers who work in the building where I receive psychiatric services for post-traumatic stress disorder (PTSD). Each day they have a home-cooked lunch prepared by one of their staff/providers. They all hold hands and bless the meal, and thank the cook(s). I’ve helped the cook in the kitchen twice in the last two months, and it has been so healing to be around food, cooking with intention, and being able to join them at the table while they eat, and be a member of the conversation. Both times I have sat with them at lunch it has been very hard on me mentally. I dissociated, I panicked, I froze, I served myself something little and poked at it – wishing I could eat it, but knowing full well that it would make me sick if I did. But I’m getting better at tolerating being at the table, and being around delicious food without becoming overcome by grief and frustration. As this summer begins, and the meal gatherings and celebrations commence tonight for Memorial Day, I feel more prepared than ever. I know that it is the connection, love, conversation, and joyful energy I long for when we have gatherings. It is not just the food I miss out on. I plan to attend at least a short period of time at as many dinner celebrations as I can tolerate. I need to set myself up for success so that I don’t become overwhelmed and devastated, or fixated on when I can sneak leftovers to my room to eat in privacy, and then pay the price in the bathroom over the toilet bowl. I’m focusing on the people, the conversations, the present moment, and the energy that a gathering of loved ones creates. Since I can drain my stomach contents, I am able to drink clear liquids, so while everyone else is enjoying the food, I can enjoy as many cups of apple juice, ginger ale, seltzer water, and ice chips as I want. It’s not the same as eating food, but it’s as close as I can get. I no longer want to hide from social gatherings in an attempt to avoid the temptation to eat food. This year I am stronger than ever and ready to tolerate the devastation of not being able to enjoy the food, because I will be filled with a deeper satisfaction that comes from being in the presence of those who I love.

Adele Espy

How Roe v. Wade Ruling Impacts a Sexual Abuse Survivor With Anorexia

I’m a sexual abuse survivor. I also have an eating disorder — anorexia, binge/purge type. My abuse started at age 4 and lasted until I was 21 years old. During each episode of abuse, I felt helpless, afraid, trapped, and powerless. While I can’t say I was lucky to experience abuse, I can say I was lucky I didn’t have my menstrual cycle yet. I was training my body too hard and starving my body too much to have a period, and therefore I didn’t get pregnant. I can’t imagine raising a child who has DNA from one of my abusers. It would be incredibly hard to have a reminder that I’m responsible to love. Now I have an implanted birth control, so I feel fairly safe (for now…), but what happens in three years when I need to change the implant out? Will I still have my right to birth control? Or will that be gone too? The feelings that flooded me when Roe was overturned were the same feelings I felt when I was abused — helpless, afraid, trapped, and powerless. I am privileged to live in Maine, where we haven’t yet lost our rights to safe abortions. But knowing that women’s rights are being stripped away makes me very scared for my future. It’s not that I don’t love and want babies either. I have a genetic condition that I don’t want to pass on to my offspring. Once I’m healthy enough to raise kids, I will absolutely adopt. I don’t want to create another sick kid when there are sick kids who already exist and need good parents. I want to be a good parent to a kid who needs love. That is my human right. And if I get pregnant unplanned, suddenly that is no longer my right as a woman, and that makes me want to scream and rip off all of my skin. Because it wasn’t my choice to be held down against my will and raped again and again throughout childhood. That wasn’t my choice, and this would not be my choice either. I identify as asexual. I could be asexual because of trauma, but it doesn’t really matter what caused it, it is what it is. That doesn’t mean I won’t get sexually abused again. Honestly, this ruling makes me want to get a hysterectomy and remove my uterus even though I don’t have sexual intercourse! And I have no reason to have a hysterectomy. It is really triggering to my anorexia too, because, despite having a birth control implant, I still do not want my menstrual cycle. Being able to make choices about my body is incredibly important to me and my recovery from post-traumatic stress disorder (PTSD). Roe being overturned is a trigger to restrict my calories because it’s the only thing I feel I have control over. It makes me want to give up on life. What’s the point of sticking around if the world is so fucked up? Restricting my calories and losing weight is all I feel I have control over these days. I don’t want to get sucked back into my anorexic patterns. I want to be healthy and free to be the driver of my own life, my own body, my own uterus, and my own feelings and actions. We cannot go back to 1973 when abortion was illegal. My whole body is shaking with rage because my gender and uterus status shouldn’t determine my legal rights.

Adele Espy

How Roe v. Wade Ruling Impacts a Sexual Abuse Survivor With Anorexia

I’m a sexual abuse survivor. I also have an eating disorder — anorexia, binge/purge type. My abuse started at age 4 and lasted until I was 21 years old. During each episode of abuse, I felt helpless, afraid, trapped, and powerless. While I can’t say I was lucky to experience abuse, I can say I was lucky I didn’t have my menstrual cycle yet. I was training my body too hard and starving my body too much to have a period, and therefore I didn’t get pregnant. I can’t imagine raising a child who has DNA from one of my abusers. It would be incredibly hard to have a reminder that I’m responsible to love. Now I have an implanted birth control, so I feel fairly safe (for now…), but what happens in three years when I need to change the implant out? Will I still have my right to birth control? Or will that be gone too? The feelings that flooded me when Roe was overturned were the same feelings I felt when I was abused — helpless, afraid, trapped, and powerless. I am privileged to live in Maine, where we haven’t yet lost our rights to safe abortions. But knowing that women’s rights are being stripped away makes me very scared for my future. It’s not that I don’t love and want babies either. I have a genetic condition that I don’t want to pass on to my offspring. Once I’m healthy enough to raise kids, I will absolutely adopt. I don’t want to create another sick kid when there are sick kids who already exist and need good parents. I want to be a good parent to a kid who needs love. That is my human right. And if I get pregnant unplanned, suddenly that is no longer my right as a woman, and that makes me want to scream and rip off all of my skin. Because it wasn’t my choice to be held down against my will and raped again and again throughout childhood. That wasn’t my choice, and this would not be my choice either. I identify as asexual. I could be asexual because of trauma, but it doesn’t really matter what caused it, it is what it is. That doesn’t mean I won’t get sexually abused again. Honestly, this ruling makes me want to get a hysterectomy and remove my uterus even though I don’t have sexual intercourse! And I have no reason to have a hysterectomy. It is really triggering to my anorexia too, because, despite having a birth control implant, I still do not want my menstrual cycle. Being able to make choices about my body is incredibly important to me and my recovery from post-traumatic stress disorder (PTSD). Roe being overturned is a trigger to restrict my calories because it’s the only thing I feel I have control over. It makes me want to give up on life. What’s the point of sticking around if the world is so fucked up? Restricting my calories and losing weight is all I feel I have control over these days. I don’t want to get sucked back into my anorexic patterns. I want to be healthy and free to be the driver of my own life, my own body, my own uterus, and my own feelings and actions. We cannot go back to 1973 when abortion was illegal. My whole body is shaking with rage because my gender and uterus status shouldn’t determine my legal rights.

Adele Espy

How My Ehlers-Danlos Syndrome Contributed to My Eating Disorder

Imagine this… You are a young adult, forming your identity in the world, and suddenly you become very sick — seemingly out of the blue. You cannot eat or drink without becoming very nauseous and having extreme gastrointestinal (GI) pain, and sometimes you vomit for long periods of time. Imagine that you have other pain as well. Your joints ache, and your shoulders, hips, knees, elbows, neck, back, fingers, toes, wrists, and ankles all dislocate or subluxate, causing debilitating pain. Imagine that you cannot stand up without blacking out. You get the feeling of the world closing in on you whenever you move from sitting to standing, and walking any distance becomes a workout. Imagine that you have allergy-like reactions to scents, soaps, materials, medications, and foods — sometimes seemingly for no reason. Allergy tests suggest you’re not allergic to whatever your body thinks is an enemy. You’re never sure what will cause a reaction and when it’ll happen. Imagine that you are so fatigued that you can’t get out of bed for months. You aren’t just tired — you are deeply exhausted to the point where your bones hurt, your chest feels like cement, and your arms and legs feel as heavy as lead. Imagine going to the emergency room for the tenth time in two months with all of these symptoms and being told doctors don’t know what’s wrong once again. No doctor you’ve seen knows why your symptoms are happening. I’ve lived like this for almost 13 years without answers. “Could it all be in your head?” doctors ask. Now imagine trying to function in the world as a young adult with all of this happening inside of your body. You still have to work, but you can’t stay awake for a full shift, so you have to quit your job. You haven’t been able to eat in weeks, and you faint regularly, so you can’t drive anywhere safely. You can have an allergic reaction or a vomiting spell anywhere you are — and at random — so you can’t socialize or leave your house without carrying around a bag. You have to take so many medications to have a bowel movement that you can’t leave your toilet for longer than 15 minutes. You are dehydrated too, so you’re really grumpy and everything is hard. Life is hard. This is my life with Ehlers-Danlos Syndrome (EDS) . Ehlers-Danlos Syndrome is a genetic condition that causes the body to make faulty collagen — the connective tissue that makes up our body’s structure. EDS can cause gastrointestinal disorders, like gastroparesis , colonic inertia , chronic constipation, gastroesophageal reflux disease (GERD) , involuntary vomiting, paralysis of the esophagus, stomach, intestines, and colon, and distention and bloating. EDS can also cause dysautonomia — dysregulation of the autonomic nervous system that can result in fainting , feeling dizzy, temperature dysregulation, chronic fatigue, exercise intolerance, and blood pooling in the lower legs. Some of the most common dysautonomia diagnoses are postural orthostatic tachycardia syndrome (POTS) , orthostatic intolerance, and neurocardiogenic syncope . EDS may cause mast cell activation syndrome too, which is when the mast cells in the body attack random substances as if you’re allergic to those things. This can cause anaphylaxis , rashes, trouble breathing, swelling, welts, hives, redness, facial flushing, tingling, and immune system responses. It may cause people to be hospitalized. EDS can also cause many neurological conditions, including spinal tethering, which may cause weakness and tingling in the lower extremities as well as constipation and bladder incontinence. It can also cause  C hiari malformation and craniocervical instability — often-painful conditions affecting the neck and skull. Ehlers-Danlos syndrome may involve cerebral spinal fluid leaks, which may cause painful migraines and headaches. It’s no wonder patients with EDS sometimes develop eating disorders , such as anorexia or bulimia, as a result of these difficult symptoms. Not only does an EDS patient often lose their healthy lifestyle and identity, but they also often are in agony and may be afraid to put anything in their mouth. Personally, I never struggled with food before I became sick. I was able to eat and defecate just fine. I was even an athlete trying for the Olympics. But when I became ill, I lost my career as a skier, I lost my friends and teammates, I lost my identity as an athlete, and I lost the little joys in life because I felt so miserable all the time. The stress of my EDS caused me to restrict my food intake during the day so I could be present with people and not be stuck hugging the toilet. At night, I would allow myself to eat whatever I wanted because I knew it was going to make me sick anyway, I missed food, and I was hungry. I’ve been to inpatient and residential treatment centers for my eating disorder 13 times, but I’m not recovered yet. So many patients with EDS are “repeat admissions” at eating disorder treatment centers because treatment often doesn’t work for those of us whose gastrointestinal systems are paralyzed. With the right care, though, many patients fully recover fully from their eating disorder s — even if they have to be tube-fed. Every single time I was discharged from eating disorder treatment, I relapsed because I was no longer being force-fed. I couldn’t tolerate increasing the pain I live with even more by forcing food into my body. The treatment centers downplayed the role my EDS played in my eating disorder , saying I would no longer have GI issues once I was at a healthy weight. But that’s never been my experience. I’ve never gotten any relief from what treatment centers tell me to do. I got relief from switching from eating food to total parenteral nutrition (TPN), though. Total parenteral nutrition is intravenous nutrition given through a port in the chest. It doesn’t use the GI system. My GI system is non-functioning, so this is how I am fed. It is an option for when your GI system is shut down. I’m not surprised I have an eating disorder with all of these symptoms. The gastrointestinal distress alone causes me to have a challenging relationship with food. If you have EDS and an eating disorder, before another doctor dismisses this very real genetic disorder that you are born with and shames you for having an eating disorder , remind yourself that you are not “bad” for struggling with life. You are a warrior for living daily life if you experience all this pain. And please know I understand why you might develop an eating disorder . Most of my friends have EDS and are in recovery from eating disorders . We stay in touch because it’s healing to have a companion who truly understands what it’s like to live life with these conditions. I’m personally grateful for my friends who have EDS and are recovering from eating disorders because I don’t even have to say anything for them to know my struggles — and for me to know theirs. I just wish we all lived closer — after all, there are so few of us that we are spread around the world. Some of us see our eating disorder s improve when our gastrointestinal and EDS symptoms are tended to (usually with medications, feeding tubes, central lines, and ostomies). But many times, once the eating disorder has “set up camp,” it’s a beast to fight. After living in a state of starvation for so many years, it can be hard to know what is normal. There are some amazing providers in the United States who specialize in EDS , and I am lucky to have one as a doctor. Many of these physicians have a genuine belief in their patients’ experiences. When treatment centers would question my intentions around food and doubt my every symptom, these doctors actually listened to me and took my word as the truth. When my intestines were shutting down, I wasn’t blamed for it like I previously had been in eating disorder treatment. Instead, I was switched to a different form of nutrition that didn’t require my gut. Being believed has made all the difference in my life. I still struggle with all the same symptoms, but I am not alone any longer. I have friends who understand me on a personal level, and I have doctors who relate to me both scientifically and from experience. I have help — real help. I wish that every person struggling with EDS and eating disorders could have help like this.