When Chronic Illness Makes You World Weary: A Guest Post

An honest, compassion account about life with lupus and other chronic illnesses

Posted Aug 03, 2014

In August of 2009, Theresa Johnson was diagnosed with Systemic Lupus Erythematosus, Sjögren's Syndrome, and Rheumatoid Arthritis. After reading one of her recent blog posts, I asked her if she’d turn it into a guest piece for us. I’m grateful that she agreed to it. I hope you find this as validating of your experience and as inspiring as I do. Toni

This may be the worst possible time for me to try and write about chronic illness. I'm feeling worse than usual. I'm tired and I am completely overwhelmed by everything "disability.” Where do I even begin is an understatement. First, let me be honest. This is not going to be one of my more typical positive pieces. At least not at the beginning. Knowing my nature, I'll find something good in all of this by the end, if you can make it that far. You may just want to bail out now.

A lot has happened—a lot continues to happen—in my world. The majority of what goes on is good. I have so much to be thankful for—an incredibly loving husband who does more for me every day than I could write about in a week. A slew of daughters who bring me so much joy and continually make me proud. A beautiful home, good health care... a bounty of blessings indeed.

But then there is this illness. This chronic, relentless, imposing, hungry disease that makes Kubler-Ross's Five Stages of Grief a condiment to my daily issue du jour. It's never ending. And now, it's become so difficult for me to actually write. Cognitive function is on the decline. Coming up with words, making sense, tying things together...all those things that for a lifetime have come so easily, now take so much work.

Not only does it take work, it takes time. It takes time to read something over and over and over again before it makes sense. Even if they are my own words. And then there is the physical side of actually sitting at the computer. My eyes are failing and doing so in such an odd fashion that the minute I get glasses, they don't work. I spent over a thousand dollars on glasses back in May only to send them back. No more of that business. It's easier to just muster through. Another unsolvable mystery.

Then there is pain. Some of it constant, some of it coming and going on a whim. I never know when, where, why. Believe me, I have spent so much time trying to figure out what causes pain—joint pain, nerve pain, GI pain, head pain... I'm giving up. Which I think, at this stage of the game is good. Not giving up, but giving up. Just giving up trying to figure everything out. Eventually doctors are happy to hear this. I know, it sounds bad, but it isn't. When I first got sick, finding out the WHY was very important. But five years and numerous diagnoses later, it's more "take it as you get it.” You learn to look out for the more serious signs and get used to putting up with the fleeting, even if it knocks you down for a few days. So, that's that. That's why writing has been "slim pickins'" as my mother would say.

Toni Bernhard of How to Be Sick and How to Wake Up has had some really spot on posts lately on her blog “Turning Straw Into Gold” in Psychology Today. In fact, I think that's what got my creative/frustrated juices flowing. Her post, “What It's Like to Take a Vacation While Chronically Ill,” especially hit home. She gives four really good examples of why going on a simple (extremely simple) vacation can cause a tremendous amount of stress both physically and mentally. All good.

But her number one point really resonated with me in an area I feel particularly tender towards right now. She stated, "Except for my immediate family and my two closest friends, I didn't tell people I was going." She then goes on to ask, "Why would I deliberately hide a trip from people?" and answers her own question with responses that both comfort me and infuriate me. Comfort because I cannot tell you how good it feels to know that what I am going through is experienced by other people. Infuriate because of the continual isolation that being chronically ill creates. Isolation due to not being able to function at a level that keeps me involved with others, as well as isolation that is created by being judged by others. The latter is what's got my dander up.

Let me be clear. Either I am oblivious to it or I truly don't experience it, but I have been extremely fortunate to have family and friends who have not judged me in this regard. My immediate family knows....knows how sick I am. They have been with me every step of the way and know the serious and unpredictable nature of this disease. They have seen it first hand. Thankfully, due to a lot of very good medication and a superb medical team, I have not had a hospital stay in over two years. But there have been some doozies in the past and we will never forget.

Theresa's disability forms from the last five years

What weighs on me is this. As thankful as I am for the disability checks that pay the bills in our home, I cannot tell you how heavy the burden is to be labeled as "disabled" nor can I put into words the judgment that comes along with that label. In particular, the judgment that comes with trying to prove that disability. There is an odd contradiction that goes on within me when it comes to justifying my illness with entities such as social security or long-term disability insurance, both of which impart their own level of scrutiny. I would wish for nothing more than to be well. I would do almost anything to return to the job that I loved and the people that made it so. To have to work so hard to prove the very thing that torments me, is at times almost unbearable. And if it were not for our financial situation, I would gladly give it up—every penny, in a heartbeat.

This illness is, by and large, the most horrible thing that has ever happened to me. It has changed my life forever. Every single moment of my life is infused with it. Not one second is spared. What I eat, when I eat, what I wear, what I read, how I sit, how I lay, where I go, when I go, when I wake, when I sleep, how I sleep, what plans are made, who I talk to, what I think...nothing goes without consideration of my illness. To stand in judgment of it as if it were not so—well, on days like this it's more than I can bear.

So when Toni Bernhard talks about not wanting to tell people that she is going on vacation, well...I get it. I get it because I have been there myself. There is something terribly wrong when people with well-documented medical illnesses are in fear of being seen out in public when they are having a good day. Or when they're not having a good day, but are just managing to look well for the sake of those they love. And maybe what's wrong is with me. Like Toni said in her article, "Perhaps I let the scales tip in the wrong direction on this one." But to be honest, some days I just don't have what it takes to do the work. To let it go. To be "okay" with it all. Some days, like this day, I'm just weary of it.

Where is the good?

What could possibly be good out of all of this? Believe me, on days like today, weeks like this week, it does not come naturally to answer that question. It takes work. It takes work to not spiral downward. My world is very small sometimes. These four walls get tighter and tighter and problems can look really enormous at times. And they are...

But the amount of space I allow them to take is up to me. There are things that I have learned while carrying on with this ridiculous illness that have become part of my toolkit that do nothing short of saving my life. And maybe they will help you. So here goes. Here's the good...and then some.

1. Be patient...with yourself. Don't panic. These things come and go, come and go, come and go. If you look back over the course of your life, just LOOK at how many times you have been in what feels like "life or death" situations. I feel as if I could come up with a million, yet honestly, I have only ever been in one. And it truly was life or death. And you know what, NONE OF THIS MATTERED. So let yourself be angry, happy, sad, miserable. Feel it, experience it...and then let it go. Good solutions come out of clear, unemotional thinking. Give yourself time for both.

2. Be patient...with your world. The enormous energy behind this whole piece is with my frustration at being judged. Yet, as I sit here and spin my tales of "evil and wrongdoing" I am, in essence, judging. And maybe justifiably so...but maybe not. There is a lot of unknown out there and my over-emotional, fried, chronically suffering mind is probably the last to know the true story. So, try giving your world the benefit of the doubt whenever possible. Our fear is that we'll be taken advantage of. Our reality is often quite different. Might as well wait for the facts. Then we'll really have someone to yell at. Just kidding. Kind of.

3. Grow. Whatever it is that brings you to this point. Whatever it is that has made you weary. In the end—or maybe even in the middle of it all—learn something. I don't know what it is for you, but for me, it always comes down to compassion. Compassion for myself and compassion for my world. In all the shit that happens out there—to us, to those we love, to those we don't know personally but still find ourselves heartbroken over their suffering—if we take from all of it the capacity to hold compassion in our hearts, then we understand the way to end suffering. Both for ourselves and for those around us. If I understand what it means to have compassion for myself and for those who hurt me, then I can no longer hold both love and hate in my heart. And if I have love, then I have peace. And if I have peace...

Then I have good.

Thanks for making it to the end. I needed you here.

Theresa is a wife, a mother of five daughters and two stepdaughters, an artist, and a writer. She worked for years as a business analyst for the State of Minnesota Department of Human Services and enjoyed many years as a runner, entering competitions with her husband and daughters. In October of 2008, after running the Twin Cities Marathon, she came down with an unexpected illness. Her health continued to decline and by February of 2009, she began a series of hospitalizations. By early fall of that year, she was diagnosis with Systemic Lupus Erythematosus, Sjögren's Syndrome, and Rheumatoid Arthritis.

Her blog is called “one moment one life” and can be found at www.onemomentonelife.org

© 2014 Toni Bernhard 

I'm the author of three books: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition) 2018; How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015); and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013).

All of my books are available in audio format from Amazon, audible.com, and iTunes. Visit www.tonibernhard.com for more information and buying options.

You might find this piece of mine helpful: "How to Talk to Yourself."