How Psoriatic Disease Can Affect Your Personal Life (and What to Do About It)

From everydayhealth.com

Chronic inflammatory conditions can change relationships with friends and family.

As someone who has lived with psoriatic arthritis for 30 years, Diane Talbert knows that the condition can take a toll on your personal life.
“Having relationships with my family and friends has been hard,” says Talbert, 61, who lives in Waldorf, Maryland. “People don't understand when you’re in pain and fatigued. They don't understand when you say, ‘I can't make it.’”
Like many people with psoriatic arthritis (PsA), which causes joint pain, Talbert also has psoriasis. The latter is an autoimmune disease that causes scaly, red, itchy skin, which can complicate social situations even further.

Diane Talbert says her husband, Alvin, has been her biggest supporter since day one.

Photo Courtesy of Diane Talbert

“I would avoid any place where I had to go that would require me to show any of my skin,” says Talbert. “No exceptions. If it was 100 degrees outside, I had on long shirts and long pants. Before I met my husband, I learned how to cover up very well.”

A Years-Long Bond Formed Through Honesty and Support

When she first met her husband, Alvin, Diane’s body was about 90 percent covered with the psoriasis rash. But Alvin has always been an understanding partner.
“He has been my biggest supporter since day one, and it has been 25 years,” she says. “My husband understood from the first day I met him. I was covered from head to toe in scales and just an emotional mess.”
Today, the couple has two sons and four grandchildren. The secret to their long-lasting union has always been honesty.
“Not sure if you have to bare all on the first date, but get it out soon,” Talbert says. “Don't be scared to share your story.”
On days when Diane can’t use her hands, or the pain is so bad that she can barely walk or raise her arms, she lets her husband know.
“Communication will help,” she says. “Let your significant other know what is going on with you. Sometimes just keep it short and sweet.”

Counselling Can Help Manage Social Isolation and Depression

From a very young age, Diane had to face her own feelings of isolation and others' misconceptions about her condition — such as the mistaken belief that psoriasis is contagious (it’s not).
When Diane was in grade school, doctors quarantined her for three months believing that the skin disease might spread to others.
“I was quarantined at 5 years old. I was in the hospital for three months,” she recalls. “My parents helped me stay ahead with my homework, and my teacher came by regularly to see me once the doctors knew what I had.”
Back at school, she refused to go to gym class because it meant exposing the scaly skin on her arms and legs.
“I could never open up about my feelings to anyone,” Talbert says. “I had low self-esteem, I didn't want to interact with other children. I was depressed most of my childhood.”

Such feelings of depression are natural and difficult to overcome, according to Jason Faller, MD, a rheumatologist at Lenox Hill Hospital in New York City.
“Some people think that once they have arthritis life is over,” says Dr. Faller. “Some people blame themselves. They think they did something wrong, or they think they deserved it and it’s a punishment. We try to dissuade them from these notions.”
Faller sometimes advises patients to seek counselling from psychologists and therapists to help them overcome feelings of depression and improve social interactions.

Can’t Find a Nearby Support Group? Create Your Own

Support groups can be very effective to build relationships. If one doesn’t exist near you, Talbert suggests starting your own — like she did. She ran an ad in the local newspaper, and 32 people showed up to the first meeting.
“I ran a support group for 10 years,” she says. “It was a place where we came together to share our fears, doubts, experiences, and just overall life. So many of us are alone with this journey, and we need support so that we don't feel alone.”
She stresses, “Don’t be ashamed to tell your story. I used to feel sorry for myself and want others to feel sorry for me, but today I just talk to someone as if I was talking about how high my cholesterol is.”

Finding the Right Treatment for Your Condition and Lifestyle

“You have to realize that you are no different from anyone else,” Talbert says. “You have an illness. I have joint stiffness along with swelling and stiffness. My psoriasis will show up at any time, and we never know how bad a flare will be. The good news is that we can manage our illness and get treatments.”
After she began taking biologic medications in 2004, Talbert’s interactions with other people improved. The drugs have not only cleared most of her skin lesions, they have decreased her psoriatic arthritis pain.
“Many patients can be effectively treated today, so it does not affect their relationships and interactions,” says Mark Genovese, MD, the director of the rheumatology clinic at Stanford Health Care in Palo Alto, California. “The goal for most patients is to maintain an entirely normal lifestyle and suffer no disability or alteration in work or recreational lifestyle.”
The bottom line, Talbert says, is that “friends, family, and partners have to realize that the person who is diagnosed is still the same person.”

https://www.everydayhealth.com/psoriatic-arthritis/how-psoriatic-disease-can-affect-your-personal-life-what-about-it/