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.

Loneliness: Understanding Loneliness in All People

Loneliness (2)

We live in a three bedroom, two bathroom house, which we share with two other people – sometimes three. Our landlord has all of his things in here, so we’re fully furnished. And, as luck would have it, the house came with a cat.

Now, I’ve never realllllly liked cats. Some of them are really nice, I think. But, I’m a dog person. Dogs are motivated to please their leader. And, I’m not gonna lie, I love when others make me happy. It’s like quality time, but probably quite selfish. Cats are motivated to please themselves – which I can relate to, but I don’t like it. I’m probably over-generalizing about the dog/cat differences. But this  particular cat that lives here – Rimmer – is a pretty cool cat. I like him.

He’s deaf, partly blind, and he’s 18 years old. So when we got here, we kind of thought we’d get a good laugh out of hearing him meow – people like to laugh at animals on YouTube, so why not us in our own backyard? He can’t hear himself, so his voice is a little … squeaky? Loud? It’s unusual, that’s for sure.

But, as the autumn months fell, and then winter came, the meow, once hopeful that we would go outside and see him, became something different. It became a couple of loud cries in the night – which at first we thought were possums (possum is actually spelled that way here, so don’t you go telling anyone I misspelled a word, ok?). These cries would wake us up for a minute, then we’d go back to sleep. It started happening almost every morning before the sun came up (like a rooster…but a cat), and the meows and cries turned to these blood-curdling yowls. It’s cold now and it happens almost daily – less when the sun is shining.

He is lonely.

No.Rimmer and I understand each other. On the days Mark & I can spend extra time with him, he is happy. He doesn’t yowl or scream. He does walk back and forth from window to window, looking in to see where we are and why we are not with him. We had to put my dog down a week before Mark and I got married last year, and she used to listen to my problems and hug me, so sometimes I like to hug Rimmer. It makes me feel better.

The lesson here is not a lesson in ending animal cruelty or digging into the study of pet psychology. I’m not saying that animals can feel exactly what humans feel because who could really know that? But, this is what strikes me when I hear our cat screaming, yowling in the night: Loneliness is universal. It strikes for good reasons and bad reasons. If a cat can be lonely, then of course it is normal for us to be lonely. It really can affect anyone, and with company and help, we can feel better for a little at a time, at least.

I just want to go through some life stages with you. Each of these age groups deal with loneliness, just like each person experiences happiness, sadness, anger, etc. There are none that experience it, notably, more or less than any other age group. As we said the first day, it’s all of us. What does matter is what we do to treat ourselves when we feel isolated or excluded, as well as how we can help others to feel better.

CHILDREN

It’s not a surprise that children, as small as infants, can have feelings of loneliness, but even once they are talking, they may not be able to verbalize, I feel alone. I need you to spend time with meneed to be held. It comes out in many different ways, and some of those ways may be even more loud and annoying than Rimmer’s midnight yowls. 🙂

Thirty-six years ago, in 1990, there were about 20% of single-parent households. Today, statistics say it is about 33% (Cacioppo 53). This compounds the feelings our children have of loneliness, abandonment, being left out. It’s a long way from a world where we all thrived in close-knit communities. Even at a young age, loneliness can take a hold. And no child should be alone.

TEENAGERS

We say that teenagers “over-react”. Their lives are filled with drama, they burst into tears for no reason, they punch walls just-because. But, what if there’s more to it than shifting hormones? Loneliness affects your executive functioning in the brain – your ability to goal-set and make decisions. If a teen is being made to feel isolated, even ostracized, at school, then of course they are going to “over-react”.

I think it’s especially important to remember during these years that the problems teenagers face are real to them. Sometimes, they are just doing the best they can to survive. They need a little sympathy before we yell at them. We don’t see what happens at school, or who put something hurtful about them on social media. They are trying to figure out where they belong, and if they can’t, then they can develop severe, chronic feelings of loneliness.

YOUNG ADULTS/STUDENTS

It’s pretty interesting to note that in studies with young adults, drinking alcohol is usually pursued by the non-lonely rather than the lonely (Cacioppo 30). It’s only later in life that lonely people turn, or continue to turn, to alcohol, and it becomes a problem.

Just in reading what I have studied, it seems that this age group is a very important time to develop coping skills for any negative emotion. The health problems correlating with loneliness seem to begin here. Studies of college students found that immune response and total peripheral resistance were greatly affected in students with higher degrees of loneliness (Pressman, Cohen, & Miller’s “Loneliness, social network size, and immune response vaccination in college freshmen”, Cacioppo 106).

Have a read of this: “…Lonely young people perceive themselves to be having a tougher time, and, over time, the stress of that subjective sense of being under the gun can create wear and tear throughout the organism. By the time they reach middle age, people who are chronically lonely have more divorces, more run-ins with neighbors, more estrangement from family. By middle age, the tougher time they may have perceived themselves to be experiencing has become a reality” (Cacioppo 35, Steptoe & Owen’s “Loneliness and neuroendocrine, cardiovascular, and inflammatory stress responses in middle-aged men and women” – 2004). Young adulthood is where most of us begin to gather without treating stress related to loneliness – and this leads to problems down the road.

MIDDLE AGE ADULTS

By the time we get through the teenage and younger adult years, we’ve conditioned ourselves to live within some fairly negative perceptions. This is why it is so important to count our blessings, to practice positive thinking, to get to know ourselves, and to be with others. All of these – treating our feelings – are important to staying healthy longer.

But, statistically, lonely adults drink more alcohol, exercise less, eat more fatty foods, and have a lower quality of sleep even though they get the same amount of sleep as everyone else (Cacioppo 30). These are symptoms of what is happening inside. The cardiovascular system can be damaged (106) and the chemicals associated with feeling unwanted or isolated “act as a corrosive fore that accelerates the aging process”, much like stress (32). Serious loneliness can seriously mess up vital cellular processes (34). Loneliness does make us sick, and the older we get, the more we’re able to see its ugly head.

All the more reason to take care of ourselves now.

OLDER ADULTS

In the United States, there are over 2 million more people living alone than there were fifteen years ago. About 40% of those are over the age of 65 (Hobbs & Stoops’ Demographic trends in the 20th century). Our cat is old and lives outside, alone. He’d probably make a really good friend to an older adult, and our landowner has thought about donating him at times.

Here is something quite interesting from a 2006 study: “…When we drew blood from older adults and analyzed their white cells, we found that loneliness somehow penetrated the deepest recesses of the cell to alter the way genes were being expressed. Loneliness predicted changes in DNA transcription that, in turn, made changes in the cell’s sensitivity to circulating cortisol, dampening the ability to shut off the inflammatory response (Adam, Hawkley, & Kudielka’s “Day-to-day dynamics of experience: Cortisol associations in a population-based sample of older adults”). Whoa. That is crazy, right? Loneliness was also found connected to the stress hormone epinephrine, as well as daytime fatigue, and lower quality of sleep (Cacioppo 10, Hawkley & Cacioppo “Aging and loneliness: Downhill quickly?”). If you feel like there is no one around to listen to you, to sit with you – to care about you, then that will hurt you. That is why it is so important to visit people in nursing homes, or even just people who live alone. It’s hard to be alone.

There are more and more older adults having to live the last part of their lives alone, and there is so much that loneliness can destroy. And that is sad, isn’t it?

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I know that there are a lot of statistics in here, but I think it’s really important to understand the process loneliness takes to beat us down, from childhood to old age. We can combat it now for the future, and we can help those in different age groups when we understand a little of what is happening in their body, mind, and soul.

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Catch up on our other “Loneliness” posts here:

1.        Loneliness: It’s All of Us

2.        Loneliness: The Problem, the Paradoxical Virus, and a Cure

3.        Loneliness: Finding the “Inner” Person

4.        Loneliness: Finding the “Other” Person

5.        Loneliness: Finding Meaning in What you Do

6.        Loneliness: For the In-Between

7.        Loneliness: Understanding Loneliness in All People

 

And these are coming soon!

11 July        Loneliness: Helping Others Helps Yourself

13 July       Loneliness: Finding the “Upper” Person

15 July       Final Thoughts on an Un-Final Topic