I’m His Caretaker, He’s My Caretaker: How to Face Chronic Conditions Together
It can be a challenge when a spouse or loved one is dealing with an illness. But what happens when both spouses have chronic conditions? And what happens when both spouses are sick at the same time? Kevin and I have been married for almost 12 years. In that time, we have had to learn how to care for each other. I don’t mean just how to love and nourish our relationship. Of course, that is essential to our relationship; but we both have chronic conditions in which we must become each others caretakers when we are ill.
I have an autoimmune disease called Celiac and I also struggle with multiple food sensitivities. I’m very fortunate that my Celiac is manageable with a gluten-free diet and other practices such as good nutrition, cyanocobalamin shots, exercise, rest, avoiding problematic foods and having good sleep habits. Kevin has a very rare genetic disease called Phenylketonuria (PKU) in which his liver doesn’t have the enzyme to break down the amino acid PHE (phenylalinine). Thankfully he was diagnosed when he was an infant. To keep his body from building up too much PHE and doing any brain damage, he is on a lifelong low protein diet and he takes essential prescriptions via pill and liquid. He’s never eaten a steak or drank a real glass of milk. And he struggles with low energy levels and sometimes difficulty with concentration. But he has a full life and thanks to modern medicine, he is able to lead a mobile life.
So what have we learned in 12 years of caring for each other? What happens when I accidentally eat gluten or his PHE levels get too high? How do you deal with a spouse or loved one when they are sick?
1. Write, write, write. Seriously, keeping a journal is vital. Writing down any concerns that you may be experiencing with your loved one is so important. I can look back at my journal entries from many years ago and see improvements on how Kevin and I deal with each other when we get sick. And also get to know your loved one’s symptoms so that you can write them down. For instance, Kevin knows what symptoms to look out for when I accidentally eat gluten. He knows that when I start getting slurred speech, blurry vision, joint pain, and flu-like symptoms, he knows that I’ve gotten “glutenized” and how to help me.
2. Patience and Kindness. When your loved one is sick, they may have a tendency to get moody and angry. I know when I accidentally get “glutenized,” I do NOT want to be around anyone. And sometimes I can get cranky. So, the best road to take when your loved one is sick is to be as patient and kind as possible. Believe me, the last thing that I want when I’m sick is someone to get impatient or frustrated with me. I truly believe that patience and kindness are essential to bringing about your body’s natural healing abilities.
3. Know when to ask for help. In 2011, Kevin was struggling with his PKU. He is 5ft 11in and back then he had lost weight, and was down to 130 lbs. He was way too thin. His muscles were catabolizing and he had no appetite. He was losing motor skills. I remembering distinctly one day while we were biking that he just couldn’t get control of his motor skills. He just had to stop and lay on the ground because he was losing his ability to grip.
He was sick for many months and after getting his medication straightend out, he was finally able to get back to a normal weight. But we had to ask for help. Between my Celiac and his PKU, we asked friends and family to help us and support us. Some people were there for us. Others were not. But the reality is, sometimes you just have to ask for help.
If you and your loved one both struggle with chronic conditions, it can be a challenge, but it also can be manageable through patience and making sure that you have a plan in place to help each other. Remember that being a team is vital to your success. And no matter how difficult things may be, just remember that your strength and tenacity will always be an inspiration to others.
Mara Alexander is the Founder of GlutenFreeWorld TV©, a Certified Health Coach through the Institute for Integrative Nutrition, a Certified Health Consultant and a Professional of the Academy of Healthcare Management. She can be emailed at email@example.com