He Was Dying. What Could I Do?

On the heels of THIS amazing post about living with autoimmune disease, I decided I would write about the other side of the coin: living with someone with an autoimmune disease. Being the “caretaker” of someone who is chronically ill is a unique beast. 

When Superman was at his worst health-wise, the burden I felt as his wife was almost unbearable at times. I saw my husband suffering, constantly in mental and physical anguish, and there was little I could do to help him. He had received a diagnosis of celiac disease, but over the course of the next few months, we realized it was much more than just that. There were many times when I longed for a support group. I desperately wanted to know there were others out there struggling with how to love and support a family member with an autoimmune disease. And honestly, I wanted to know how to cope. 

There were times when Superman thought he was going to die. There were dark nights that seemed endless, like morning would never come. There was dismay after yet another doctor’s appointment with no answers, and discouragement when a new “remedy” proved to fail. There was anger at God, confusion about His plan, and moments when I almost buckled under the pressure. 

There were mornings when I woke up feeling like an iron weight lay on my chest, reminding me that another day of caring for five little ones and a deathly ill husband was looming in front of me.

I want to be honest: caring for someone with an autoimmune disease is mentally and physically exhausting. What I learned along the way, I want to share with you. Here are five tips to supporting someone with an autoimmune disease. 

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1. Be OK with losing some spontaneity. 

We used to be pretty spontaneous. We’d head out of town for a night, go to a friend’s house for dinner, or just think of something fun to do on the fly. But when Superman’s health started failing, I realized that I had to let some of that go. Actually, I had to let most of that go. 

Going out of town for a night or two was out of the question. During his worst time health-wise, Superman had debilitating insomnia. He would lay awake at night, periodically falling asleep, only to be jolted awake nearly every hour by his hyper-sensitive body. He would get up, scour the Internet for answers, and later head back to bed, exhausted and discouraged that he found none. The thought of being away from home during that time was too overwhelming to even consider. 

Going to dinner at a friend’s house completely lost its luster. Superman was allergic to so many foods, that even at family gatherings, he would need to bring his own tupperware featuring the only foods he could eat: meat and vegetables. The joy of sharing a meal with family or friends was gone when people either did not believe Superman even had a problem or they would sympathetically say, “Oh, Chris! I forgot you can’t eat any of this. I’m so sorry!” For someone who hates being the center of attention or being a burden on others, it was just easier for him to avoid social gatherings. 

I remember going through moments of resentment. I am, after all, an extrovert and thrive on time with my friends and family. I was having to retreat into our fortress of solitude, not really by choice, but because I needed to be there for Superman. Any time I would go to a gathering without him, I would be burdened with guilt, feeling like I was ditching him. 

I finally had to accept the fact that loving Superman meant sacrificing some of the spontaneity I love. And instead of resenting him for it, I thought about what a burden it was on him knowing he was holding our family back from doing all the things we would like to do. It shifted my heart from resentment to empathy. Try to put yourself in your loved ones’ shoes and think about the millstone they carry around their neck as the “burden” on the family.  

2. Be willing to cook special foods.

I couldn’t take Superman’s pain away and I couldn’t magically allow him to be able to eat all those foods again, but I sure as heck could do everything in my power to do the best with what we had. 

My blog started because I wanted Superman to have some variety in his diet, as limited as it was, and for him to eat the best-tasting food possible. I scoured the Internet for recipes, and eventually started creating my own when I realized I was fully capable of coming up with delicious foods for him. 

Honestly, it was the best way I could show my love to him at the time. With only a small handful of foods that he could eat without having a reaction, it was my life’s mission to be as creative as I could with those few items. The effort I put in didn’t go unnoticed: Superman gushed over my meals, thanked me profusely for the time I put into them, and just the look on his face when I came up with a treat for him that he could actually eat made it all worth it. 

Instead of seeing your loved one as a burden and wishing that they could just eat “normal” food like everyone else, find out what foods can work for him or her, and seek out recipes featuring those ingredients. I know people who are suffering with food allergies whose spouses have no interest in cooking for them. I’ve even heard, “It’s your deal; you cook your food.” This is such a detriment to your loved one’s healing and will set them back significantly. They need to know they can count on you.

3. Accept their “quirks.”

Superman had a lot of quirks when he was really ill. His body was not absorbing the nutrients he needed, he was emaciated, getting minimal sleep and was in a constant state of brain fog. All of these factors created anxiety and irrationality, including obsessing over even little things, like a twinge in his foot or a cramp in his side. Suddenly, something small was blown way out of proportion and he would be researching what ailment he may be dying from online. 

He also had routines that couldn’t be broken. He needed to wake up at a certain time, go to the bathroom at a certain time, eat a certain breakfast each morning, have a certain bedtime routine…he became a little OCD. 

It can be very frustrating living with someone who needs things “just so,” especially when it doesn’t seem logical to you. There were moments when I wanted to just let myself lose it and scream, “That’s not normal! You don’t need to have your carrots to the left of your broccoli!” But I didn’t. At least not out loud. I took those complaints to God and screamed them at Him. Silently. 

I knew this was not my husband. All of the quirks were not who he was, they were merely manifestations of how incredibly screwed up his body was. 

If you are living with someone with autoimmune disease, especially if they are still struggling significantly, they may have some of their own “quirks.” The best thing to do is be calm, collected and stable. You can remind them that everything is going to be ok, encourage them to hang in there, and just let them have their quirks. You don’t need to try to fix them. Just accept the quirks as part of the process right now. When they get closer to healing, some of those quirks may subside. 

4. Be their advocate.

This is probably one of the most important things I want to cover. 

When someone is suffering from an autoimmune disease, they need an advocate. Oftentimes, they cannot be their own advocate. They have barely enough stamina to make it through their day, let alone try to fight for themselves at a doctor’s appointment, or defend themselves to some ignorant person. 

It is your job to be their cheerleader and to be in their corner. Go with them to doctor appointments, speak up for them when the doctor says no to whatever test you are asking for. Be ok taking the brunt of questions when someone asks what’s wrong with him or her. Even if you’re discouraged yourself, don’t push that burden onto others when your loved one is around. You don’t have to carry all that weight yourself (see the “bonus” item below), but there is a time and a place to vent. Don’t make your loved one your sounding board when they are barely hanging on by a thread. They need you to be the strong one for now. A time will come when the scales even out, but for now, you need to be their advocate. 

If you are going out to eat, call ahead to restaurants for them. Find out if they are allergy-friendly and what menu items are available for your loved one. Ask to speak to a manager ahead of time. Bring a few items that you know your loved one will be ok eating, so that if something happens at the restaurant, and the food is contaminated, you at least have something on hand that they can eat. 

Mostly, just be ready to stand up for them in any situation. Let them know that no matter what, you’ve got their back. 

5. Be a safe haven and know it’s not going to get better overnight.

One of the things I pride myself on as Superman’s wife is that I never criticize him or tear him down. Sure, we may disagree on things sometimes, but I never attack his character. He knows that when he walks in that door at the end of the day, his wife is going to be there with open arms ready to help him carry the burden of his day. 

For someone with autoimmune disease, making it through a day, especially when they have a job, can be almost too much to bear. Exhaustion, tension, anxiety and discouragement can drown them. They need to know that you are their soft place to fall. 

As I said before, Superman had many quirks when he was struggling with his health. He knew he could share his frustrations and worries with me, and I wouldn’t judge him or condemn him, no matter how illogical they seemed.

Be there to talk your loved one down from the ledge when they seem like they’re going to fall over. Be the rational, calm voice and the open arms they can fall into. It’s an invaluable gift they will forever be grateful for.  

In addition, know that healing doesn’t happen overnight. It took Superman three years of eating a very, very strict diet of basically meat and vegetables before he was able to start reintroducing other foods. Even now, he’s not “healed.” He has flare-ups, where he’s down for the count for weeks. He has continual health issues that just haven’t been solved. Knowing you’re in this for the long haul will help you avoid frustration when it just. doesn’t. end.

*BONUS: Take care of yourself too.

I know I said that being an advocate was the most important thing I was going to talk about, but I changed my mind. This is the most important thing. 

You cannot, I repeat cannot take care of your loved one if you are beaten down, discouraged,  and at your wit’s end. I learned this the hard way when I almost lost my marbles and was overcome with depression, severe adrenal fatigue, and exhaustion after never tending to my own needs. 

It is vital that you share your frustrations with a trusted friend or family member, someone who is OK being your sounding board and supporting you. If you don’t have someone, email me. 

Find time to do things that fill your soul periodically. Even if you can only squeeze something in once a month, do it. 

Take time for yourself, whether it’s just going on a walk, enjoying a cup of coffee in the morning before everyone else gets up, or reading a good book at night after everyone goes to sleep. You will be the best support to your loved one only if you are taking care of yourself first. 

And be honest with yourself. Don’t try to be Superwoman (or Superman–there’s already one of those!) and push through when your body is telling you to slow down. Be in tune with your own body and be watching for signs like exhaustion, insomnia, headaches, gastro-intestinal issues or other ailments. And when something starts popping up, take that as a sign that you need to stop and reevaluate your strategy for caring for your loved one. 

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Friends, caring for someone with an autoimmune disease can sap your energy, liveliness and zest for life if you’re not careful.  I hope these simple tips will help you thrive with your loved one as you navigate through life on this uncomfortable journey. 

Do you care for someone with an autoimmune disease? What has kept you surviving?