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.
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.
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.
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.