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: It’s All of Us

10 daysversuslonely ness

 My husband is from New Zealand, but I am from Texas. We got married at my grandparents’ house last Thanksgiving, and now we have been living in Auckland for a few months. I cannot work because we don’t have immigration consent as I am writing this post, so I have had little to do while my husband is in his last semester of nursing study.

Loneliness.

I feel like I say that word a lot lately. Yet, somehow, even the word doesn’t carry the weight of the emotions conjoined into those three simple syllables.

We all feel lonely. And that is part of why this site exists – so that we know that we are never really alone. Thanks for that.

Part of my coping with this new time of my life – starting off in a new country with new people and foods and ways of joking and teasing – is by writing. Writing this blog, for example.

But in the last few weeks, loneliness has integrated itself into worthlessness and a lack of purpose. I had purpose when I was teaching English literature to teenagers. I had purpose when I was helping youth at my church community back home. I had purpose when I was planning a wedding. I had purpose when it was only me and I could dream of travelling and wandering and going wherever I wanted – whenever I wanted.

I’m learning something new. Life changes and sometimes purpose changes with it.

So how do I cope with this?

How do I get back to a life of purpose in the middle of so much change?

Through life, I have learned that when negativity floods in – whether it’s self-doubt, being fired from an easy job, or just someone looking at you the wrong way – immediate action is required. If not dealt with and changed to a positive, the negative thought or feeling seems to compound itself and leads to other negative thoughts and feelings.

EUGENE (1)My theory in working through loneliness is, at the present, largely based on the same skills we learn in counseling to combat depression. Both loneliness and depression can be debilitating, and one can lead into the other if the dice lands a certain way on the table of brain chemistry.

As someone who believes in Jesus, I have the ever-present peace of knowing that my faith is giving me purpose. That is more helpful than anything. I daily thank my God for the purpose and plans that he has for all of his children. That is my number one.

And so, here, I write my list of what I do (or try to do) to refocus and balance:

  • Be in the light – both physically and spiritually.
    • The sun not only gives us Vitamin D, it boosts serotonin, increasing mood. On cloudy days, my husband whips out this handy “lightbox” and turns it on right in front of my face. It helps me.
    • The son of God is the light of the world. Without this source of light going into the deepest parts of my soul, I am empty. He fills voids created by loneliness. And I’m not even just saying that.
  • Draw. Or Colour.
    • Get an adult colouring book. Or a kid’s one. Create your own. Colours can be oddly therapeutic. So is colouring.
    • Sometimes, I draw myself how I want to be – happy, peaceful, thinking good thoughts.
  • Go to school. Any school. (Today, I’m sitting in a university library. I don’t attend here. 😉 )
    • This may not be useful for many people, but I freakin’ love to learn. So I sit and I learn whatever I want to learn.
    • Research your interests. I’m very interested in the subject and science of “loneliness” right now, as you can see. So I spent three months finding everything I could on the subject. I’ve also been studying pet therapy… because I want a dog. 🙂
  • Teach.
    • This is something I enjoy, partly because I learn so much myself through teaching.. So I’ve created a blog where I can do something like teaching while I’m unemployed!
  • Socialize. Find the “Other” Person.
    • Join a club, a church group, a gym. Be with other people. I joined a gym, and even though I don’t talk to anyone there, it’s nice just to be with people. The same goes for the library or a café!
    • Our landlord has an 18 year old deaf cat at our house. I pet it when my husband is studying or at his clinicals. It’s just an animal, but being with something else that is alive and breathing is comforting. If you have an animal, cuddle it. If not, hamsters are cheap in the States. 🙂
    • Be with your family, if you can. I can skype my parents. I can go to my in-laws’ house. I, personally, always “leave” feeling better.
    • Tell your best friend, your husband, your wife, your kid – whoever – that you want to spend time with them. Make a plan, set a day, and enjoy every moment. One day when I was at my loneliest, Mark stayed home with me and took me to the wharf. A week later, I was still looking back to that day, feeling the good feelings over and over. Count the blessings of those days as hope during the bad days.
  • Write.
    • Writing has always been my favourite thing to do, even though I’ve been shy and embarrassed to do it as much as I like. It’s therapeutic to write in a journal. It feels good to write a card to people I am thankful for.

What is your list? How do you deal with your lonely times? If you can’t think of anything, try to concentrate on what has always made you happy. Most of the things on my list fit into everything I wanted to be when I was a child: an author, an artist, and an adventurer. Look back at your childhood self. Where do you find joy? We all find joy in being with people on some level. How can that help you in your loneliness?

If you don’t have an answer, yet, then I hope and pray that by the end of this series, you will have one. Or two. Or many.

Over the next few weeks, I’ll be posting a series of, what I believe, will be useful articles on the problem of loneliness, solutions to help you through the loneliest times, and the hope that you can have within yourself to make it. Stay tuned for:

 

24 June       Loneliness: It’s All of Us

 

27 June       Loneliness: The Problem, the Paradoxical Virus, and a Cure

19 June       Loneliness: Finding the “Inner” Person

1 July          Loneliness: Finding the “Other” Person

 

4 July         Loneliness: Finding Meaning in What you Do

6 July         Loneliness: For the In-Between

8 July         Loneliness: Understanding Loneliness in All People

 

11 July        Loneliness: Helping Others, Helping Yourself

13 July       Loneliness: Finding the “Upper” Person

15 July       Final Thoughts on an Un-Final Topic

Loneliness is not something you alone feel. Everyone feels lonely. Many people feel chronically lonely. You are not alone in the fight to be with others and feel whole. It’s not just you. It’s all of us. Let’s take it head on – together.