For those who don’t have it, the mental and physical toll of psoriatic arthritis can be difficult to understand. Take a look at these are 15 statements that only those who have psoriatic arthritis are familiar with. If you don’t have the condition but know and love someone who does, this list can help you start deepening your understanding of psoriatic arthritis.
1. Half the battle is getting the right diagnosis.
Teresa Dishner, 64, a former chemistry teacher from Virginia, saw her primary care doctor after experiencing sudden, painful symptoms. “I was having extreme pain while getting dressed, and my fingertips bled while teaching class,” says Dishner, who was diagnosed with psoriatic arthritis in 2002. The doctor initially told her to simply lay off salt. But Dishner had a feeling that something more was amiss, so she decided to see a rheumatologist. That’s how she got the right diagnosis. “If you suspect there’s something behind your pain, don’t ignore it and think it will go away,” says Renae Rabe, a finance manager living with psoriatic arthritis in West Allis, Wisconsin. She believes she had psoriatic arthritis for at least five years before receiving her diagnosis. “Go to your doctor until you get answers,” Rabe says. “It’s important to rest when you need to and not push yourself too hard, especially on days when your symptoms are particularly severe,” says Joseph Markenson, MD, a rheumatologist at Hospital for Special Surgery in New York City. It’s also important for the loved ones of those who have psoriatic arthritis to understand how draining the condition can be — for example, people who have psoriatic arthritis may have to cancel plans frequently or head home early — and be sympathetic and patient.
3. Just because you’re not strong enough to push a shopping cart doesn’t mean you don’t work out.
Rabe says she exercises four to five times a week at home and in the swimming pool. But on some days the pain can keep her from doing the simplest things, like pushing a shopping cart. While exercising can’t completely alleviate your symptoms, it can help strengthen the muscles around your joints. Biking, walking, and swimming are all good fitness options for people who have psoriatic arthritis. However, it’s important to remember that pushing yourself on days when your symptoms are particularly severe can do more harm than good.
4. Changing your diet won’t cure psoriatic arthritis…
There is no known cure for psoriatic arthritis, and making dietary changes like going paleo or gluten free isn’t a remedy. The good news, however, is that a healthy diet with plenty of anti-inflammatory fruits and vegetables that’s low in fats and sugars can help keep psoriatic arthritis symptoms under control. “Also try to steer clear of dairy and caffeine, which may aggravate psoriatic arthritis symptoms,” says Dr. Markenson.
5. …Neither will taking deep breaths or meditating.
While your well-meaning yogi friend may think the cure for your symptoms is to practice a few asanas, try as you might, yoga is not a cure for psoriatic arthritis. However, it may alleviate the stress in your body that can worsen symptoms or trigger a flare. Yoga can also help ease pain and increase mobility. So if you find the practice relaxing and beneficial, go for it!
6. Hearing the words “But you don’t look sick” can make you cringe…
While you might be able to take that phrase as a compliment, it can be frustrating to hear it when you’re struggling with an invisible disease that can make you feel sick all day, every day. Psoriatic arthritis has the potential to put you in a wheelchair, and just because you’re walking around on your own doesn’t mean it’s easy. You’d much rather hear someone tell you how strong you are for keeping it together given the amount of pain you endure. For those who love and care for someone who has psoriatic arthritis, it’s important to validate their struggle without minimizing or belittling their symptoms.
7. …As can the words “You’re too young to have arthritis.”
“When you say the word arthritis, every older person you meet has it, too,” Dishner says. While well-meaning people may sympathize by comparing their own ailment with yours, psoriatic arthritis is a much different form of arthritis and does not develop because of aging. It can occur at any age but typically begins to cause symptoms among those between 30 and 50 years old, according to the National Psoriasis Foundation (NPF). It’s not the job of someone who has psoriatic arthritis to educate others on their particular disease and set of symptoms. Be sure to do your own research to be the best possible ally.
8. You’re a serious germaphobe.
You wash your hands religiously, carry sanitizing wipes everywhere, and avoid germ hubs, such as bowling alleys and movie theaters. And with good reason: Anything that can affect your immune system may worsen your symptoms. Many psoriatic arthritis medications suppress the immune system, leaving you more susceptible to germs, and flare-ups can occur when you get an infection. While vitamins and general attention to hygiene can help ward off sickness, having to skip bowling night with your family to avoid getting sick can still sting — even if it does help you avoid a monthlong cold.
9. Chair selection is important.
It can be extremely difficult to get in (and out of!) different types of seats, depending on their height, width, and design, because of pain or stiffness. “Luckily, I was a chemistry teacher, so I had lab stools, which were much easier for me,” Dishner says. “But outside school, I would find myself scanning a room to find the right chair.”
10. You might avoid wearing short sleeves on a hot day if you have psoriasis too.
As if psoriatic arthritis wasn’t enough, many people who have the condition also have psoriasis, which produces patches of thick, red skin and silvery scales. Even when the temperature is 80 degrees and climbing, sleeveless shirts aren’t an option for many. “My psoriasis is mainly on my elbows, so I would never dream of wearing a sleeveless dress,” Dishner says. “Three-quarter sleeves are my best friends.”
11. A trip to the physical therapist can feel more heavenly than a massage.
A few months after being diagnosed with psoriatic arthritis, Rabe began physical therapy. “I went two to three times a week, and the exercises I learned to do helped me cope with the pain,” she says. “Now any time I feel an ache in a new part of my body, I’m right back at the physical therapist’s office.” Exercises recommended by a therapist can help keep your joints flexible while strengthening your muscles and reducing pain.
12. A good day doesn’t mean you’re better.
Many people who live with psoriatic arthritis have good days and bad days. Although good days don’t mean you’re healed, it’s important to work with your doctor to find ways to have more good days than bad. Tracking your symptoms and their impact on your life, as well as your ability to participate in everyday activities, may help your healthcare provider identify new ways to help you, says Markenson, including potential lifestyle changes and additional treatments.
13. You’re always on a search for the next best thing.
In recent decades, there have been more advances in medications and studies confirming the benefits of certain therapies for psoriatic arthritis than ever before. Doing your own research and following up on it with your rheumatologist will help you and the doctor find and maintain the best treatment plan. Says Dishner, “It’s important to understand your options and to never give up hope.”
14. You wish more people understood what you’re going through.
Because psoriatic arthritis is not a particularly common condition (more than eight million people in the U.S. have psoriasis and an estimated 30 percent of those individuals go on to develop psoriatic arthritis, according to the NPF), it can be hard to find someone else who’s going through the same thing you are. “It took 12 years after my diagnosis to meet someone else with psoriatic arthritis,” Dishner says. That means it’s important to create your own support system. Keeping your friends and family involved in your experiences with psoriatic arthritis and your treatment plan, says Markenson, may help them to better understand what you’re going through and how to help you.
15. You’re a psoriatic arthritis expert.
Most people who have psoriatic arthritis usually do research on symptoms and new therapies after they’ve lived with the condition for a time. They also take it on themselves to talk about their findings with people close to them. “It’s important to educate the people around you,” says Rabe. “I consider myself an expert because I’m always researching and learning about my disease, which makes me comfortable answering questions to help my loved ones better understand what I’m going through.”
