My Chronic Illness Journey

My Invisible

Chronic fatigue/myalgic encephalomyelitis (CFS/ME), adrenal fatigue, IBS (irritable bowel syndrome), fibromyalgia, food intolerances, migraines, dysmenorrhea & ovarian pain, disordered eating, depression, anxiety, and suicidal thoughts. My invisible illness journey, like so many others, was not easy. In fact, it was freakin’ hard. A mountain that I was too tired to climb.

Looking back, I’m proud that I made it through. I am so, so proud.

It was the end of October 2011 when I got sick. Over six years ago now. I was working as an au pair, or nanny, in Auckland and suddenly couldn’t get out of bed.

It was hard to see a cause at the time. I suppose it had been a stressful year, though I still think of that year as one of the best of my life. That was the year I met my husband and my best friend, and got to have a small part in raising two beautiful little girls. But, a family friend passed away in October. And I was a victim of cyber-bullying right at that time. Plus, my host mom was travelling a lot so I had more responsibility during that time. Maybe each of these played a role. Maybe it was a change in diet. I’m not really sure.

Mark and I had just started dating a couple weeks earlier. It was him who took me to all of the doctors, to the emergency room once, and to get blood work.

The first doctor urged me to take a week off of work (but really, I had no choice). She told me to stay somewhere else, if possible, so that I wouldn’t feel guilty around the house.

Confession: I still feel guilty about having to leave that family. I was never able to go back to work, and I know that was hard on them. When I came back after that week away, I could not get out of bed. I could hardly speak. Mark had to tell them that I couldn’t work anymore and I could hear them from my bed where I lay, immobile and helpless.

After I left there, I stayed in a small spare room in a house with some others my age. Mark had to bring me food, sometimes helping me to eat it. He even had to walk me to the bathroom at time – which is not how one wants to start a relationship.

I wanted so badly to just get better. But weeks turned into months, and I had just managed to get on a plane back to the States at Christmas.


Those with a sudden onset of chronic illness will understand the frustration of going from doctor to doctor with no diagnosis. Even if I tried to count all the doctors and specialists we went to, I couldn’t. I remember one doctor telling me that maybe I wasn’t breathing properly.

They first ruled out diabetes, thyroid, cancer, heart problems, etc. It was a couple months of just ruling out everything and spending a lot of money doing so. We drove four hours to a really nice hospital where they did several other tests, and still had no real answer. My gastroenterologist found pre-ulcers and gastritis and that was as far as we got.

No one wanted to diagnose me with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis). The doctors didn’t seem to believe in it.

That made me feel worse because they didn’t believe that my symptoms were real. The people around me struggled to understand, and guilt chewed me up inside – even though none of this was my fault.

I do want to say that there were sympathetic doctors (and acquaintances) along the way – and I know they really, really wanted to help me. They just didn’t really know how. And I still think of them fondly. Caring people always make a difference – whether or not it’s the kind you’re looking for at the time.

My parents did a lot of research and we found Jacob Teitelbaum’s work on CFS/ME in From Fatigued to Fantastic!  I’m sure that what we did from his suggestions helped a little. I could help out with children’s programs at church most weeks.

It wasn’t until mid-2013 that we found a doctor near us who would really help us. He was an M.D. who had gone back and gotten a D.O. (Doctor of Osteopathic Medicine).

We brought our list, our script, and presented it to him, and I remember my mom and I crying with relief when he said, “I can help you.”

When you give someone hope, you give them power.


They did more tests – some that other doctors didn’t do because of the holistic nature of them – and found adrenal fatigue (which I had been tested for and not diagnosed) and bacteria that they believed I had from a trip to India and Nepal in 2007. They gave me a book called Adrenal Fatigue: The 21st Century Stress Syndrome by Dr. James L. Wilson. And I turned a corner.

After cutting out sugar, caffeine, dairy, and gluten, we added a probiotics, a powerful set of pills for

Our church was doing a Vacation Bible School that week and I did the class that I’ve done since I was 13 – and I realized that, hey, I enjoyed teaching.

I was feeling better and my doctor was really optimistic so I signed up to teach high school English in a small town close to home.

Those two years of teaching were phenomenal! Oh, how I loved it! I loved waking up and being able to get out of bed. Every day was a gift. There were still some bad days, but I always managed to recover. During this time, I did chelation therapy and continued to see my doctor. Though I used all of my sick days, I felt that my life could be full again. I was making a difference and I was happy.

Mark proposed (we had been doing long-distance for four years) and we planned a wedding in three months. We got married in November 2015 and came back to New Zealand after New Year’s.

I didn’t do so well after that. We had planned on me working, but I was sick all the time. We were happy, but my health took a turn for the worse.

We did some doctors again and tried different things – and the same things as before – but I was losing hope. I blogged to help me through the hard times (through a loneliness series, some lies we tell ourselves, and No-Sugar September posts). But after a few months, the brain fog and body fatigue were too much. I was in pain half the time and we just coasted until a couple of months ago.

During this time, my depression got worse. I felt suicidal at times. This is something that is important to realize about invisible illness: It is hard for us to stay hopeful. My husband helped me so much during this time. It could not have been easy for him to see me at my worst.


We had heard about this program called The Lightning Process for years, but hadn’t done it. We knew a couple of people that had been through the training by this time, so that helped us finally sign up.

I’m writing this post now without any brain fog. I’m not in pain. I’m not tired.

I am HAPPY and I am HEALTHY.

Just in the past week, I have done three huge walks and several shorter ones.

Two months ago, I would have struggled to do half of a short walk. And then I would probably have been in bed for a couple of days recovering.

I’m cooking and cleaning and showering whenever I want now! This sounds basic, but some days I had to choose between taking a shower or talking to a friend because both were exhausting. And there are people that are way worse off than I was.

I’d love for you to read about how I’m living a full life now. Tune in later this week to read about it! I hope it can help someone out there who feels hopeless, as I once did.

My Eating Struggles: Disordered Eating & Binging

the-forager

This is one of those uncomfortable posts for me, but I want to share. At the very height of my eating struggles, I longed for a post like the one I am about to write – someone with whom I could identify, who might help me know what was going on, who could tell me what to do. Google didn’t help, Pinterest didn’t help, Facebook didn’t help. Sometimes you need another human. I want to be that human for you if that’s what you’re looking for.

I’ve been trying to learn more about eating disorders for two or three years now because I’ve struggled with this feeling of being out-of-control around food – like what we’ve talked about with Binge Eating Disorder. I never told my doctor and, until now, I’ve only told maybe three people. From other kinds of therapy, I knew the right steps to find help. But I couldn’t find a place where I could go. I couldn’t find a web site with answers to my questions.

Here are the steps I knew I needed to take:

  •   I knew I needed to tell someone
  •   I knew I probably needed professional help – doctor.
  •   I knew I needed to build a support system for accountability
  •   I knew I needed to figure out how not to throw up
  •   I knew I needed to develop a good relationship with my body
  •   I knew I needed to develop a good relationship with food

But, that’s all that I knew.ive-been-strugglingwith-disordered

The entire year of 2015, I struggled with eating. Did I have a disorder? I don’t know. I should have told my doctor, found out what I was dealing with, and taken steps from there.

Yesterday, I told you that I got confused along the way from the 1990s on. But then in 2011, I came to New Zealand and began to have stomach problems accompanied by severe fatigue and depression. By November of that year, I could no longer work and started the process of going from doctor to doctor. I went back to the States. The development of irritable bowel syndrome (IBS), gastritis, and some pre-ulcers led to disordered eating for me. All of a sudden, everything I ate made me sick. Chronic Fatigue Syndrome made it worse because it was hard for me to get out of bed, let alone think of what I could or should eat. I wasn’t eating much unless someone helped me.

I began cutting out dairy and gluten and acidic foods like tomatoes as I learned that they affected me. The range of food I could eat was limited, and I was lucky to have people helping me along the way. My mom went through and made lists of things I could eat so that it was less confusing. My dad would bring me food home from town at any opportunity.

Somewhere in all of this, I started skipping meals. At first, this was because I was not on a schedule – sleeping most of the day and night. It was easier when I quit sugar for a few weeks. For a time I felt better and started teaching, but I was still not eating much during the day. The more I didn’t eat, the more I craved easy carbs and sugar again.

I started binging at night in private. I would avoid going places where I might see someone I knew, and if I went to a restaurant where people might recognize me, I would get something healthy to eat. At the supermarket, I only bought healthy food because some of my students worked there. I began to care about what I ate around others. I began to hide what I wanted to eat and was craving to eat. I’d get annoyed when well-meaning people asked me what I had for lunch or what I was going to eat for dinner. I often didn’t tell my boyfriend (now husband) everything I ate when he asked, and he asked almost every day on Skype just because he wanted to make sure I was eating enough.

I was skipping meals, feeling good about not eating; then, I was eating out of control later on. I’d feel guilty and then abstain from meals again. Then, I’d binge again and feel guilty. Sometimes, I even purged. My binge episodes were embarrassing and I hate typing this out for the world to see. I’d be so hungry that I’d order two or three times the amount that I would normally eat. And I would scarf it down more quickly than I’d ever eaten before. I’d pretend that I would just eat half of it and save the rest for another meal. But I never did. The more fast food I ate, the more sugar I craved, so I ate a lot of ice cream and welcomed the sweets my students brought to me, though I tried to eat them in secret. I threw up a lot of what I binged, and to this day I’m not sure if it’s because I wanted to or because I really felt sick. Maybe it was both.

It was like I was two people: a health freak and a fast-food monster.s

I don’t remember what point I was at when I realized that I needed help. But, I started looking for it online at first. I wanted someplace I could call that would help me through – tell me what to do. I wanted to find an article to which I could relate. I didn’t want to ask the people that loved me for help. I didn’t want to bother them. I couldn’t find a place that was just for people struggling with food.

I didn’t know what was wrong with me. I knew that it wasn’t anorexia or bulimia and I believed the lie that I had to look like I had an eating disorder in order to ask for help. I wanted to talk to my doctor about it, but I felt like he would look at me up and down and shrug me off because I wasn’t bony. Which would never have happened.

I finally talked to my best friend and she helped with a plan to get control. Without her, I’m not sure I would have made it through. She helped me to see that there was a cycle I was repeating: starve myself, binge, feel guilty, repeat. She told me that my metabolism was messing up and that by not eating, my body was just confused. That’s why I was gaining weight. After I talked to her, I talked to my boyfriend about it, and we came up with a plan for him to help me. He asked me what he needed to do to help and I told him what I needed. He would remind me to eat and not to skip meals in a positive way. I would not lie to him about what I ate or did not eat. He would encourage me, and I would accept the encouragement. I talked to another best friend closer to where I lived and she helped me as well.

My boyfriend and my best friend got me over to New Zealand last year during the American summer, Auckland winter. I cried a lot, and hated food. Everything I ate – even apples or oats or other things we consider healthy – made me feel guilty. I hated eating around Mark. But both of them looked after me, talking me through it. They were the support team that I needed and we made plans on what I needed to do when I got back to the States.

Because I couldn’t find where to go, I joined the YMCA to start taking care of my body the right way. I was very careful about this – not to over-exercise. I needed to make exercise about loving myself rather than hurting myself. One reason I joined there is because I saw that they had a thing called “wellness coaching”. I knew that I wouldn’t feel comfortable with a personal trainer at this point, and I wanted some sort of nutritionist – or really just someone to talk to for a little while. I needed someone that could work with my fatigue – someone who wouldn’t judge me.

For a month, I met with the wellness coach. She made me a very basic plan that I could stick to. She saw that I couldn’t talk about food without crying, and she was patient with that. Little weekly goals: Eat little meals throughout the day, try to go to one workout class a week – a small one, and come see her weekly. She gave me information about protein to eat and she basically just listened to me. My larger goal was to build a healthy relationship with food while building a healthy relationship with myself.

Since then, I have married and I am doing well eating in New Zealand. From time to time, it’s hard. But it helps having my support team in place. You who read these blog posts are on that support team now, whether you know it or not. And I am grateful.

This blog is the start of something that can help others. I want to have a center somewhere along the line. There needs to be a place where people that are struggling with food, depression, self-image, and just general life struggles can come and find sanctuary. I want a literal, tactile Little Sanctuary. I want it for you and I want it for me.

In the next few weeks, we’ll start fundraising here to create such a place here in Auckland City. And I will be working hard to make this dream a reality. It’s my birthday this weekend, and this center is my dream for the year – and will hopefully be a place where women can find help for years and years to come.

11 Confessions: Living with Chronic Invisible Illness

Someone needs to write this. I wish someone had written it for me. I wish someone had written it for the people I love to help them understand. I wish they had written about chronic invisible illness years ago. Maybe they did and I just couldn’t find it.

Creating (1)Today, I am suffering. So, it seems like a good day to write some confessions. I, like hundreds of thousands of people in the world, live with chronic invisible illnesses. I’m talking chronic fatigue syndrome (myalgic encephalomyelitis), adrenal fatigue, fibromyalgia, depression, anxiety, food sensitivities, irritable bowel syndrome, and recurring gastritis and UTIs, and many other illnesses that no one sees when they look at you. It’s not pretty to talk about. It’s not comfortable to talk about. It’s not nice to write that I am sick.

For others, it may be different chronic illnesses, things that people on the outside may not be able to see – arthritis, anemia, chronic headaches, or even cancer. These invisible illnesses affect your life like it affects mine.

I get sick a lot, and it’s not easy to always be sick, or to always wonder if I will feel well from one day to the next. Those that don’t know me well probably find it hard to figure out why I’m not always at church events or having to cancel coffee dates. Those that do know me best often get upset that I play it off in front of others. I don’t let on how hard it is. When someone asks me what I did last week, I try and brush it off and say, “Oh, I just sat around like a bum.” I want them to know that I don’t want to be like a bum. The verb “do” is a tricky one, and it’s hard to say what I “do” because everything I want or need to do, I do one day at a time.

More and more of us westernized, stress-driven men and women are being faced with a new sort of illness. It comes in many different and unique forms. It is general and consistent ill health. And it is often invisible.

When I first came to New Zealand (on January 1 of 2011), I was fairly healthy. I lived with a family and looked after two beautiful little girls as their au pair. A few months in, I started having these insane gastrointestinal pains and feelings of severe weakness and dizziness. After the stress of an unexpected conflict, I became almost immobile. By November, I was no longer able to work or drive. I could not function. There was a nice family, and then a house full of people my age who let me stay with them until I had strength enough to fly home to Texas.

After months going from doctor to doctor (from general practitioners to neurologists to gynecologists to gastroenterologists and many in between), they found a few things, but never anything that made me feel better.

I stopped eating sugar, dairy, and gluten for a time and got well enough to teach English for two years. But, I’m back in bed now at least 2 to 3 days each week. I want to be honest about what it’s like to live with chronic ill health because it’s hard for most of us to be honest about.

I hope that, in reading all of this – and these confessions that I give you – you can either find strength in relating to someone else like you, or that you can find mercy and understanding for those who suffer.

What is it like

So, what is it like to live with chronic health problems? I give you my confessions.

11 CONFESSIONS OF LIVING WITH CHRONIC INVISIBLE ILLNESS

1)      I always feel guilty.

The “invisible ills” always feel like we’re letting people down. Lately, I feel guilty for not being able to cook or to do the laundry. Mark has enough to do without taking care of me. I’m truly lucky that he doesn’t mind. But, when I was first sick, the guilt that I had from not being able to look after those two beautiful girls that I was nannying was unbearable. I still feel that guilt. Realizing that it’s out of my hands is hard. The same goes for having to say “no” when I want to do things with friends or family. The guilt comes, and it never seems to go away.

2)      I feel like I am alone.

We feel like outcasts because we just can’t “do” everything that others can do. If I go out for one fun day, it wears on me, and I spend the next day (or two or three) recovering. Those days recovering are lonely days – days that we want to be with people. But they are also days that we don’t want others to see us. We want people to understand, but most people don’t. This makes us even more lonely.

3)      My chronic illness means I often have anxiety and depression.

My depression and anxiety came with chronic fatigue syndrome. Many times, they go hand-in-hand. When we can’t live normal lives, it’s hard to cope in other ways. I can be soooo happy one day, and sooo low the next.

4)      I am almost always in pain.

Whether it’s depression or anxiety, CFS or fibromyalgia, there is pain. There is emotional pain, and there is physical pain. Both are invisible. I am in pain most of the time. Some days I am okay, and on those days, I am so very thankful. But if we seem grumpy or irritable one day, it might just be that we’re hiding something.

5)      Every healthy day is a gift.

My students used to ask me why I was so happy. Part of the reason was simply that I could get out of bed in the mornings and come to work. When I wake up and feel like a normal human being, there is just this immense thankfulness inside of me. Health can easily be taken for granted.

6)      I don’t always look sick.

It may sound obvious as a confession of “invisible” illness, but I want to confess it here. Sometimes when we tell people that we are sick a lot, they look at us puzzled. Sometimes they even say, “But you don’t look sick.” That is true. We don’t look sick. But we feel sick. Even bloodwork doesn’t always show that we are sick. They don’t know what causes chronic fatigue syndrome or fibromyalgia. But it is real. Sometimes I wish people could see how I felt. But, they can’t.

7)      It’s sometimes impossible to get out of bed.

Have you ever had the flu? A high fever? That’s how I feel when I am sick. I tried to get out of bed today – and even drove to where Mark was working. This invisible illness hit me, and he had to leave his car there and drive me home. Yesterday, I was probably out of bed for maybe an hour (and that includes going to the bathroom throughout the day). I have had days when I’ve had to be led to the bathroom. I have had days when Mark had to spoon feed me himself. When these days happen, none of us enjoys them. We want to get out of bed. We want to be normal. But, it just doesn’t happen.

8)      I am afraid. To work, to make plans, to have a life.Creating

Fear can easily control the lives of those with invisible illnesses. For the person with anxiety, they can feel completely debilitated in a crowd. They can be afraid to go out for fear of having a panic attack. It’s hard to explain to people that I am afraid to work right now. It’s a difficult confession to make. What if I can’t do it? What if I get sick and let people down? These invisible illnesses often put our life on hold. It’s just not fair.

9)      Exercise doesn’t always make me feel better.

Just today, I was reading that a primary symptom of chronic fatigue syndrome is flu-like symptoms following over-exertion. When I do too much, I am bedridden. The key is to exercise slowly. Very slowly. If we go out for a run to help ourselves feel better, as is often suggested by friends and family, we can put ourselves back for a few days.

10)   Not all doctors understand.

I went to two doctors in New Zealand before coming home, not including a trip to the Emergency Room. One of them told me I just wasn’t breathing correctly. In Texas, I went to at least seven different doctors. I left half of those crying because there was nothing done to help me. My mom and dad (whoever went with me that day) and I would tell them everything, and after a couple minutes, they would start fidgeting. Many people with “invisible” illnesses sometimes feel that we’re wasting a doctor’s time with all of our problems. To this day, I feel guilty when I sit with a doctor. I know that they are busy, and I feel bad. Of course they can’t fix my problem in ten minutes. This means I have a hard time telling them everything I need to tell them.

11)   I feel useless. Almost daily.

Another difficult confession to make. When I feel most sick, I have an almost continuous feeling of uselessness. I feel like I can’t do anything – can’t do anything right – can’t do simple tasks – can’t feed myself – can’t take my medicine – can’t remember to message or text someone back. Without the ability to work or cook or clean or, sometimes, to type, what is there to be useful at?

Those are my confessions – and, I believe – the confessions of many that suffer from illnesses that no one can see. Our conditions, diseases, and illnesses may be invisible. But we are not. Show someone compassion this week. You do not know what is underneath their skin.