Helping family members understand the merry-go-round of chronic illness from a spouse’s perspective

Helping family members understand the merry-go-round of chronic illness from a spouse’s perspective

By Scott and Emily Filmore

A recurring topic of conversation in health support groups is the difficulty spouses, partners, parents, siblings, children, or friends of people with chronic illness show in understanding and accepting the realities of their loved ones’ health situations. This is often compounded for people with the so-called invisible diseases such as myositis, fibromyalgia, MS, 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 fatigue they struggle with, they often look normal to the outside world.

Patients report that they feel ostracized from family activities, as accommodations are not made for their limitations and they have to miss them, they feel minimized and ridiculed as they are questioned about why they often cancel plans, and they complain that spouses and significant people in their lives act as if they are choosing their diseases.

Helping family members understand the merry-go-round of chronic illness from a spouse’s perspectiveScott Filmore, Emily’s partner of thirteen years, weighs in on what he does to help create a successful marriage even as they face the daily struggles of her multiple health issues. Scott and Emily work hard to have open communication, they don’t hide their feelings, and they speak frankly about the things that bother each of them. They have never openly argued, in thirteen years, not because they haven’t had any disagreements, but because they have made a commitment to each other, which they recommit to every day, to be kind, caring, and loving to each other in every interaction. They always ask themselves, “What is the most loving way to say this?” before speaking. This philosophy has assuaged many-a-ruffled-feather.

Below are Scott’s thoughts when confronted with the knowledge that some spouses and significant others, or other family members, are not understanding, or worse, are even doubtful of the experiences of the chronically ill patient. His insights, if heeded by family members, could bring knowledge and peace into relationships. He has taken an unfortunate situation, looked past the negatives, and found the silver lining. By following his straightforward, and common-sense advice, others may be able to break through their anger and resentment to move into being supportive partners in their loved ones’ health journeys.

Scott says:

“I can’t imagine being mean or dismissive of Emily when she isn’t feeling well. I think people who are being so must either, not understand the full extent of their partner’s illness, or be 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 research and educate yourself and treat them nicer. It seems like it must be coming from a place of ignorance or lack of understanding about the disease. Being kind and knowing that they aren’t making it up comes with more knowledge. I think if you are with someone, you need to have the right attitude and ask yourself, “Why would your spouse make this up?”

When I met Emily, and I 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, thought about blaming her, or being angry with her. I knew that 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 that it was something could be resolved. After I knew that it was not going away, even before we were completely committed to each other, I always had hope that she could go into remission.  In those early days, 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, and she couldn’t change it. So I deliberately decided that I wouldn’t be mean, 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 I wanted my life to be with her.

That’s not to say it’s 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 for her, getting medications, rubbing her when she’s in pain, sitting with her when she’s scared, and going to doctor 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, unexpectedly, or cause side effects, and to know that we will never know all of the answers. I have sympathy for her, I wish I could change it all and take it away for her, but I know I can’t. 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 think I made a mistake in marrying her since her illness has stolen so much from us. When I look back, I wouldn’t want to change anything because it might have altered the good things of my life. I have a beautiful daughter and we 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. Also, I agree with all that Emily wrote in her book, The Marvelous Transformation: Living Well with Autoimmune Disease, about 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 my thoughts and choose to be gentler and kinder toward their loved ones. I hope you will remember they didn’t choose their circumstance, but you can choose to help make the situation better instead of worse with a little bit of thought and tenderness.”

We encourage patients to share Scott’s words with any family members and friends who may benefit from hearing them. Family members should seek out information about relevant illnesses so that they can truly understand what the whole family faces, medically and emotionally, and make more conscious decisions about how they treat their loved ones. Emily’s book, The Marvelous Transformation: Living Well with Autoimmune Disease has additional caregiver tips that explain in more detail how Scott has helped Emily along the way. Hopefully, armed with more knowledge and empathy patients and loved ones will understand how to communicate with each other more clearly and learn how to lean on each other, rather than fight against each other in their quest for health.

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Hi, this may be interesting to you: Helping family members understand the merry-go-round of chronic illness from a spouse’s perspective! The link is included below: https://understandingmyositis.org/helping-family-members-understand-the-merry-go-round-of-chronic-illness-from-a-spouses-perspective/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.