How to Support a Loved One With a Chronic Illness
My husband, Scott, and I wrote this post together to address a recurring topic of conversation in health support groups. And that issue is the difficulty of spouses, partners, parents, siblings, children or friends of people with chronic illnesses to accept the realities of their loved ones’ health situations.
This is often compounded for people with so-called invisible diseases such as myositis, fibromyalgia, multiple sclerosis, chronic migraines and other autoimmune diseases because no matter how bad patients feel on the inside, no matter how weak their muscles, no matter how much fatigued they feel, they often look normal to the outside world.
I asked Scott to share his thoughts below about how some spouses, significant others or family members don’t understand, or worse, doubt the experiences of their chronically ill loved ones.
“I can’t imagine being mean or dismissive of Emily when she isn’t feeling well. I think people who do that must either not understand the full extent of their partner’s illness, or they’re acting without thinking.
It frustrates me to hear about other spouses and family members who treat their sick loved ones this way because I think you would both be happier if you took time to the time to educate yourself about their condition.
It seems like it must be coming from a place of ignorance or lack of understanding about the disease. Being kind and knowing they aren’t making it up comes with more knowledge. If you’re with someone, you need to have the right attitude and ask yourself, “Why would your spouse make this up?”
When I met Emily and found out how sick she was, we encountered a lot of confusion about her health. We saw multiple doctors who didn’t know what was going on or what to do, but I never thought she was faking her illness or thought about blaming her or being upset with her.
I knew if it was hereditary, it was out of her control. I also looked at her lifestyle and knew that she wasn’t doing anything to cause it. But regardless of lifestyle, I realized that no one deserved to be that sick.
So I decided early in my relationship with Emily that I would be supportive and hope it would be something that could be resolved. After I realized that it wasn’t going away, even before we were completely committed to each other, I always had hope that she could go into remission.
When we started to get serious, I still had to make a conscious choice, along with the decision to be together, that if I stayed with her, it wouldn’t be fair to be together and hold her health against her. I had to decide that I would accept her health status, whatever it was, because I wanted to be with her. So I deliberately decided that I wouldn’t resent her for something she couldn’t control. And in the end, I decided the best thing I could do was to be loving and supportive to help her through it because I loved her and wanted to live my life with her.
That’s not to say it’s always been easy. Emily’s illness has affected me, too. I have struggled with our financial difficulties. I handle any physical activities that she can’t do. I do a large majority of the housework on top of working long hours.
And I have to take the extra time to do things for her when she is acutely ill like running errands, getting medications, rubbing her when she’s in pain, sitting with her when she’s scared and going to doctor’s appointments or medical procedures, all of which have interfered with my work.
Plus, I worry about her on a daily basis. It’s frustrating and exhausting to watch her go through treatments that start to work and then stop working unexpectedly or cause side effects. It’s frustrating to know that we will never know all of the answers. I wish I could change it all and take it away for her, but I know I can’t. But what I can do is be kind and supportive and not make things worse by being rude, dismissive or angry.
She asks me all the time if I made a mistake by marrying her since her illness has stolen so much from us. When I look back, I wouldn’t want to change a thing because it would have altered the good things in our lives. We have a beautiful daughter, and we also share our home with our wonderful nephew. I have a wife who loves me just the way I am. And in spite of her health, we have a beautiful life.
I agree with everything Emily wrote in her book, “The Marvelous Transformation: Living Well with Autoimmune Disease.” And that is the lessons we have learned and the gifts we have received from her disease. We have learned a lot about gratitude, we learned to slow down and enjoy life, we embrace humor and we have learned to appreciate each other and treasure our time together.
I hope other people will read this and choose to be gentler and kinder toward their loved ones. I hope you will remember they didn’t choose their circumstances, but you can choose to help make the situation better instead of worse with a little bit of thought and tenderness.”
Follow this journey on emilyfilmore.com.