How Arthritis Affects the Family
By Emily Delzell
Being understood by and understanding your loved ones are key to fortifying family relationships.
When you live with arthritis, your family lives with it, too. They don’t experience chronic pain or fatigue but, like you, family members can struggle to accept changes forced by the disease.
“The family unit works dynamically, so when one part changes the others have to shift as well,” says Julia Kim, PhD, a clinical psychologist at the Hospital for Special Surgery in New York City. “Because arthritis is an unwanted change, it can be very difficult for everyone involved to accept.”
Family roles can shift in practical and emotional ways, with patients’ partners or children taking on more household responsibilities, for example. But the changes can also be more fundamental — and sometimes without people realizing it’s happening, says Ann Steiner, PhD, MFT, a marriage and family therapist in private practice in Lafayette, California.
“With a chronic illness, patients’ biggest challenge is to not feel like they are the disease. And the partner’s biggest challenge as much as possible is to not lose his or her identity as a romantic partner and have that replaced with being a just a caregiver,” she says.
Arthritis can represent a loss of life as it was before for both the person with arthritis and their family members, says Kim, and feelings of grief are normal.
“Having arthritis can be like going through the stages of grief. There can be denial of the gravity of what’s happening, depression, bargaining for things to be different and anger before you get to acceptance,” she says. “Whatever feelings the person with arthritis has, their loved ones are going to feel, too. Though probably not at the same time or in the same order, as every person goes through the process in their own way.”
The Ebb and Flow of Acceptance
With chronic illness, adaptation, adjustment and acceptance are ongoing processes for everyone in the family.
You may feel like you’ve come to a place of acceptance, but then there’s a challenge and suddenly you’re back feeling angry and depressed, explains Steiner. “If you don’t expect that it’s going to be like that, you’re going to feel like you’ve done something wrong, but in fact it’s quite normal.”
Learning about arthritis and talking about the feelings and issues it’s causing can help everyone adjust.
This means learning generally about the type of arthritis you have, but also what your experience of arthritis is. “Communicating how you feel when you’re having a flare or a bad day helps everyone understand there’s a reason you may be irritable or moody,” says Kim.
It’s equally important for family members to speak openly about what’s bothering them. “Sometimes we don’t want to tell people that we’re hurting or anxious because we’re trying to protect them, but those feelings still come out in our behaviors or in our mood,” Kim says. “When we can say how we’re feeling, it can help to deflate tension.”
Tips for People with Arthritis
- Let your family know you understand that arthritis affects their lives, too. Loved ones can feel guilty about the range of emotions (including anger) they may feel. Acknowledging this gives them permission to express those feelings.
- Put yourself in their place. Try turning things around. If your loved one was hurting and wouldn’t ask for or accept your help, you might feel powerless and shut out.
- Build an extended support network. Having friends you can ask for a ride to the doctor or talk to when you need to vent gives loved ones a break. It also gives you a safe space to talk about frustrations you might not want to share with family.
Tips for Family Members
- Understand that you may be angry. “Anger is sometimes harder for family members to deal with than other emotions,” says Kim. “But it’s natural to feel angry about what’s happening, because in some ways, it’s happening to them too.”
- Resist the urge to do it all. You may feel pulled to take over every responsibility and chore. Instead, says Kim, be willing to ask extended family and friends for help with more mundane tasks so you can reserve some energy for emotional support, which is often more draining than physical tasks. Steiner recommends the websites CaringBridge and Lotsa Helping Hands, where people can post health updates and ask for practical help.
- Know you can’t fix everything. “A lot of the time when people talk about what’s bothering them, they just want loved ones to know how difficult things are,” says Kim. “You can’t solve their problems, but you can meet them where they are by letting them know you understand.”
Tips for Healthy Communication
Being open and honest about challenges can strengthen family bonds. “When you speak honestly and talk about difficult feelings, you learn more about each other and grow closer. Understanding how others feel and respond is the foundation of intimacy,” says Kim.
The goal of effective communication is being understood, says Steiner. “This means figuring out how you feel physically and emotionally and how someone could help, then making that as clear as possible and negotiating it with the family.”
It’s also normal not to know exactly how you’re feeling—or what you need. Sometimes you know you need something, but you don’t know what, explains Kim. “If that’s how you feel, then that’s what you share. Just having the other person understand where you are at that moment and being OK with it helps you feel less alone.”
Here are more ways to keep communication flowing and healthy:
- Nickname your arthritis. Steiner says it’s key for people with arthritis to remember they are not the disease. Giving arthritis a nickname (she uses Arthur) allows everyone to talk about it without merging the person and the illness. “So, when you’re asking how things are going, the question becomes, ‘How is Arthur treating you,’ rather than ‘How are you,’ because you are not the disease.”
- Schedule a weekly or monthly family meeting. Steiner recommends that meetings start with announcements, in which everyone says how they are feeling, and ends with complaints and recommendations. “You can complain, but you have to give at least one recommendation to solve the problem,” she says.
- Give each other a break. “We’re not always going to know what to say or say things correctly,” says Kim. “Know that you’re going to get frustrated and angry and that’s OK—as long as you come back together to talk about it and get past it.”
- Consider seeing a therapist for a short period if you’re struggling. They can give you practical communication tools to negotiate challenges, says Steiner. It’s important to accept that you (and family members) may need ongoing counseling as you manage a chronic illness.
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