Caring Others Overview Part II
Lupus patients rely on an army of healthcare professionals to combat the many aspects of their disease. However, on the home front, wives, husbands, children and other loved ones play crucial roles in helping lupus patients cope and live life as fully as possible.
This series of articles will focus on “caring others” – those people who live, laugh and love with relatives and friends who have lupus. Because the disease is so individual, several different aspects of the caring others relationship will be explored, from parent to child to spouse to friend and beyond.
There are many turning points, frustrations, and victories that caring others experience – a whole lot of tears and laughter! Through it all, there are valuable insights that come with coping with a chronic disease. These articles will share the personal ups and downs of the remarkable people who care about and for their loved ones with lupus. And hopefully, through individuals’ stories, some common ground, understanding and encouragement will be given, too.
When the Life of a Loved One is Turned Upside Down
The effect of a person’s lupus diagnosis on loved ones can bring on a wide array of emotions: Denial, grief, confusion, fear, even relief. Besides coping with the patient’s illness, the loved one must grapple with these internal emotions, which are often powerful and painful.
“Before she was diagnosed with lupus, I didn’t have any strong feelings about her physical health,” says Joyce, the mother of Maureen, and adult lupus patient. “The diagnosis was a sho
ck, and afterward there was a complete upheaval in my own thinking about her well-being.”
“Prior to her diagnosis, it was very confusing. I knew something was wrong, but the problem with lupus is that you don’t look sick necessarily,” says Irv, who has been married to Brian Ann for 21 years.” “After her diagnosis, I still didn’t know what lupus was. But it was happening.”
Because the course of the disease varies from patient to patient, loved ones also can experience frustration at the degree of change and upheaval in everything from medications and treatments to daily routines.
“In the beginning, it sounded like a disease that was a nuisance. I didn’t comprehend the life-threatening and debilitating aspects of it,” says Alan, who has been together with Barbara for 10 years. “Time certainly took care of a lot of that knowledge.”
“With any chronic disease, there’s an element of surprise,” says Jeff, who has been married to Fredi for almost 17 years. “With lupus, you’re bound to have surprise; you just never know what each day will bring.”
Other aspects of the world of lupus can be just as difficult for a loved one to have to face. Joyce says, “It would make life easier if there were more research into the disease. It’s frustrating that there hasn’t been a whole lot of research.”
“It tests your dedication, love and caring for the other person like nothing I can think of,” says Jeff.
“With lupus, ‘A’ never equals ‘B’ – there’s a whole big alphabet out there,” says Alan.
Still, with all the difficulties and unexpected changes, many people nurture and maintain relationships with lupus patients – and speak enthusiastically about it!
“What’s the alternative?” asks Joyce. “Unless you sever yourself from the relationship. You need to be there, encourage and pray. They have to know that there’s someone who cares.”
“I’m part of her and she’s part of me,” says Irv. &
;ldquo;You’re part of each other. The more I can help, the better off she is and therefore I am.”
“Who wants to marry a lupus patient?” asks Alan. “The truth is, lots of people!” In fact, many relationships thrive in the midst of the frustrations and difficulties in coping with lupus. Jeff says: “You come to terms with accepting the fact that the person you married, who you love, has this disease. If you love that person, then you have to deal with it. If you love somebody, you will give it your best shot.”
In the next article, more “caring others” will offer their stories and practical insights into how they have achieved success in coping with lupus for themselves and their loved ones.