Pain, anxiety, and fatigue are just a few of the symptoms of psoriatic arthritis. Here’s what it’s really like to live with psoriatic arthritis.
Psoriatic arthritis is much more than just a few body aches. From pain and stiffness to severe fatigue, the condition comes with an array of symptoms that pose daily challenges for those who live with it. For those who don’t have the condition, the mental and physical toll of psoriatic arthritis can be difficult to understand. Here are 15 statements only those who have psoriatic arthritis are familiar with. If you don’t have the condition but know someone who does, start deepening your understanding with this list.
1. Half the battle is getting the right diagnosis.
Teresa Dishner, 60, 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. “I was only diagnosed five years ago, but I think I’ve had it for ten years. Go to your doctors until you get answers.”
2. Your energy level is like a bank account.
Psoriatic arthritis can cause extreme fatigue. For every task you complete, or plan to complete, you drain your daily energy bank. Putting on mascara or talking to a neighbor on the street costs you energy. And sometimes, even if it’s the first thing you do after waking up, a shower may be all it takes to put you right back in bed.
“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 the 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 with psoriatic arthritis may have to cancel plans frequently, or head home early.
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 with psoriatic arthritis.
4. Changing your diet won’t cure psoriatic arthritis . . .
There is no known cure for psoriatic arthritis, and 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, caffeine, and corn,” says Dr. Markenson, “all of which may aggravate psoriatic arthritis symptoms.”
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 stress, and stress can worsen symptoms and bring on a flare-up. So if you find the practice relaxing, 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 makes 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.
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 20 and 30 years old.
8. You are 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, most people with 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 do not 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 health care provider identify new ways to help you, says Markenson, including potential lifestyle changes and additional treatments.
13. You’re always on the 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 affects only about 2 to 3 percent of the U.S. population, 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.”