Long before I met him, my husband Charlie began having horrible problems with his stomach. He was in Columbia doing mission work when it started. While he was out on the mission field one day, he suddenly doubled over in gut-wrenching pain and had to be transported back to his lodgings. He thought he was having a negative reaction to something he ate. So, he nestled in and hoped the discomfort would pass quickly. But from that day on, his life changed forever.
I met him several years after that, at a business meeting, actually. I was in graduate school at the time, and he and his business partner had come to speak to a few of us about helping them with a project. Charlie caught my attention immediately, but not for the reasons you might think. He was sitting slightly behind his partner, David. He barely spoke. About halfway through the meeting, I noticed he was trembling. Beads of sweat were gathering on his forehead; one actually dripped down the bridge of his nose and left a dark droplet on his shirt. He wiped it quickly and excused himself from the meeting. We didn’t see him again until the meeting was over.
After completing graduate school, I was hired by Charlie’s company. I witnessed lots of meetings that went exactly like that first one. I’ll be honest — I thought he might have a drug problem.
It was so much worse than a drug problem.
It wasn’t until Charlie and I began dating that I learned the truth behind his strange behavior. He had a disease called Crohn’s, which is a type of inflammatory bowl disease. I’ll spare you (and Charlie) all the details, but you can read about it here if you’re interested. Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications. There is also no known cure.
I finally understood the sweating, the shaking, the disappearing act he often performed in meetings. He was in almost constant, chronic, gut-incinerating pain. With horror, I realized the pain wasn’t even the most evil thing about Charlie’s illness.
It was the humiliation of it all.
Imagine having constant bowel pain. Imagine never being sure if you will make it to the bathroom in time. Imagine the anxiety of needing to always know where the bathrooms are. Imagine how frightening it would be to go to new places and not know if reasonable toilet accommodations were there. Imagine being so terrified of your unreliable bowels that you decide, as a grown man, to wear a diaper to work.
Exchanging one humiliation for another.
It was devastating to learn the constant turmoil Charlie was under. But sadly, that wasn’t the worst of it all. After we got married, Charlie began suffering complications from all the experimental drugs he was on to try to put the Crohn’s Disease into remission. For years, his doctor had prescribed Prednisone, which was the only thing that seemed to give him some relief. Prednisone is a corticosteroid. It tends to be prescribed for short periods of time to help Crohn’s patients get flare-ups under control. But in Charlie’s case, his Crohn’s symptoms were so severe that he was put on Prednisone indefinitely. Charlie knew the risks of being on such an addictive steroid long-term, but he had no other choice.
With time, the side-effects of Prednisone became almost as debilitating as the Crohn’s Disease it was meant to treat.
He had developed extreme weight gain and water retention, and with that came high blood pressure. He was having severe bone pain and Rheumatoid arthritis, which we learned was also a side-effect of long term Prednisone use. He should have been wheelchair-bound and on disability, but he powered through it. Walking with a limp and practically at a right angle, he did his best to get around.
The doctors took him off Prednisone and tried Remicade and Methotrexate instead. A home nurse came out to teach Charlie and I how to administer the horrifically painful injections into his leg, and for awhile that was the new normal. But soon, the Methotrexate left him constantly nauseous and vomiting, which only added to his already severe bathroom anxiety. So, the doctor took him off of that, too.
And then came what was almost a death blow to our marriage — the Prednisone withdrawal.
I guess the horrible side effects of the Remicade and Methotrexate had camouflaged the withdrawal symptoms of the Prednisone. But once the Remicade and Methotrexate were out of his system, the Prednisone withdrawal symptoms came into sharp focus.
The first to come was the chronic fatigue. He was so debilitatingly tired that he couldn’t even get out of bed most days. When he did get out of bed, he would often fall asleep right where he was. While I was busy keeping house, running my business from home, taking care of two little babies, and cooking all the meals, Charlie was often found passed out on the couch. Even knowing everything he was going through, it was hard not to feel resentful (more on that in a moment).
Next was the depression, mood swings, and difficulty managing stress. These are all known side-effects of Prednisone withdrawal, but we didn’t know it at the time. Charlie became volatile. Sometimes, he was a wet blanket, all fun and joy sucked out of him. Other times, he was angry and bombastic, shouting at me and the children in frightening fits of rage. He was not the man I married anymore. And because we didn’t understand that this was all because of his withdrawal, I thought this was just who Charlie was now. And I couldn’t be married to someone like that.
Crohn’s Disease, and other “invisible diseases” like it, are positively evil.
They’re called invisible diseases because, first of all, the symptoms aren’t immediately apparent to others. The symptoms are all internal and most of the time there is a complete absence of external physical indicators. Crohn’s patients don’t look sick. Second, because of the stigma and shame around what Crohn’s does to a body, many Crohn’s patients don’t talk about their illness — even to their family members.
I understood that Charlie was sick, and I knew that he was suffering. Yet, I didn’t know the extent of it. He was uncomfortable sharing the humiliation of his experience with me, and he deserved his privacy, his dignity. So, I was left in the dark about a lot of it. The result was that I lacked understanding about what he was really going through. I knew he was sick, but not that sick.
So, what do you do as a spouse when you don’t know how sick your partner is, and don’t understand the impact his ailment is having on his behavior?
You get angry. You get resentful. You feel isolated and alone, left to manage a family and household on your own, and not understanding where the person you married went.
It seemed like Charlie had checked out on all of us. Well, the truth is, he had. But not because he didn’t care, or didn’t want to be involved. He was just far sicker — physically, mentally, and emotionally, than any of us knew. And before even he could finally come to understand the extent of damage his illness had caused to our marriage and our family, I was moving out.
Crohn’s Disease had whittled our marriage down to a sprig the width of a hair, and there just wasn’t enough left of it to keep us together.
My departure from the house made Charlie finally see that he needed help. He needed to get his withdrawal symptoms under control. He needed to go to therapy, needed to learn coping strategies for the depression, the anxiety, and the stress. He needed to start working out again and get his body back into functioning condition so that he could be the husband and father we needed. He needed to stop leaning into the identity Crohn’s had cloaked him in, and find himself again.
And, he did.
The purest evil of invisible diseases like Crohn’s is how easily they can tear families apart — how easily they destroy so much more than just the body.
Charlie and I almost lost each other. Our children almost lost the life we fought so hard to give them, the life of growing up with both of their parents. Crohn’s Disease threatened to take away everything we had. Somehow, by the grace of God, we made it out.
There is hope for couples surviving invisible chronic illness. I truly think the only way through it, though, is to insist on communicating about all of it. To the sick partner, please consider sharing even the stuff that feels embarrassing or shameful. Your spouse needs to understand, to really know what’s going on with you. They think they know what you’re going through, but you know they don’t. Share it with them. Give them the information they need so they can show up for you the way you need. They can’t support what they don’t know about.
To the healthy partner, try to always keep this little nugget in the back of your mind — even when they say they are sharing it all with you, there are things they are holding back. Learn to have compassion for the secret parts. Try to anticipate the needs. Do the research yourself to find out what unspoken things your partner might be going through, and do what you can do help them know you won’t judge them or be uncomfortable. They need your support so, so very much more than you know.
Amber Wardell is a doctor of psychology and author who speaks primarily about women’s issues related to marriage, motherhood, and mental health. Subscribe to the FREE newsletter to get exclusive content delivered to your inbox and to never miss a new post!