Getting the emotional and practical support from loved ones who play a role in your care can pose challenges for everyone involved. Communicating some basic facts should come first. Explain what psoriasis or psoriatic arthritis is, how it affects the skin or joints, that neither disease is contagious, and that good treatment options exist.
From there, dermatologist and psychologist Rick Fried , M.D., PhD., offers tips to keep the dialogue as free flowing and tension-free as possible.
1. Identify your feelings
Start by considering the ways in which psoriatic disease has affected your life. Maybe it’s prevented you from playing sports or hindered your confidence to dress a certain way. “Make it clear in your own mind how you feel about that and what it is you wish the people who care about you would do – and not do,” says Fried, clinical director at Yardley Dermatology Associates and Yardley Clinical Research Associates in Pennsylvania.
Once you determine your feelings, you’ll have an easier time explaining them to someone else. And, when you know what you want, it’s easier to ask for support and for others to provide it.
For instance, would you prefer that others comment on whether you skin looks better or worse? “Certain people with psoriasis might see that as a very welcome sign of caring or affection, while others might perceive it as intrusive or humiliating,” he says.
2. Be honest
Individuals prefer and respond better to different forms of encouragement. You may want someone to pester you about keeping up with medications, exercise goals or healthy eating habits, while that approach could be a major source of frustration for others.
Whatever you feel, be upfront about it. Unclear communication makes everyone feel uncomfortable, says Fried. Ask friends and family to share their feelings, as honest reactions will also help keep the conversation flowing.
“There’s nothing worse [in relationships] than feeling there’s unsaid business and not knowing what it’s about,” he adds.
3. Put yourself in someone else’s shoes
Remember that relationships are a two-way street. Don’t be afraid to ask loved ones if they’re upset by something you said or about current struggles with your disease. Fried suggests reminding others that you care, too.
You can accomplish this by saying something like, “I want to answer your questions and understand your feelings, to maybe make things easier for you,” he says.
4. Respect boundaries
Keeping the patient-caregiver relationship healthy and productive also means understanding when and how much to share.
“There’s a certain amount of self-disclosure of our pain and suffering that people in our lives do want to hear, depending on our intimacy with them,” Fried says. “But the reality is that no matter how much our family and friends care about us, there’s a limited amount of time and tolerance.”
Striking a matter-of-fact tone, keeping it short and sweet, and understanding your caregiver’s personality can help you navigate the fine line between getting much-needed support and asking for more than someone can comfortably give.
If someone doesn’t respond the way you would hope, it doesn’t necessarily mean she doesn’t care about you or your health. Certain personalities have more emotional capacity than others, and that can change from day to day or hour by hour, explains Fried.
5. Practice self-care
You can also encourage friends and family by showing you’re serious about self-care. For instance, meet regularly with your doctor, adhere to your treatment plan and find healthy ways to manage stress. “It’s helpful for caregivers to know you are trying hard to optimize management of the disease,” Fried says.
Check out this Video about Caring for Care Partners
Psoriatic disease can be painful and difficult to talk about. If you need help talking to family about your disease, the National Psoriasis Foundation has resources to help. Request our free booklet, Psoriasis and Psoriatic Arthritis for Care Partners.
By Emily Delzell for NPF