Psoriatic arthritis takes a toll on daily living. Many people’s rheumatologists do not understand the effects of psoriatic arthritis, making it hard to feel heard and even harder to get the right medicine.
The real impact of PsA
We understand that doctors are busy; some teach, some do research, and some spread their time over several locations. But between the long-term effects of medications and PsA's own unpredictable nature, patients are left in a tight spot if they can’t get examined quickly.
To find out more about this problem, we reached out on the Psoriatic-Arthritis.com Facebook page and asked, “Do you think your rheumatologist understands the impact PsA has on your life?”
More than 100 people responded. Here is what was said:
My rheumatologist does not understand
The biggest complaint was that rheumatologists do not fully understand what it is like to live with psoriatic arthritis. Several people in the community said that it is nearly impossible for a rheumatologist to fully understand psoriatic arthritis unless they have it. They may understand it intellectually, but not on an emotional level.
“I think this is half our battle: trying to get our doctors to understand all the other things that go with the illnesses we have.”
“I really like my rheumatologist, but no, he does not understand.”
“Trying to explain that is like talking to a brick wall. I do not know what else to do. I just suck it up and deal with it myself.”
My rheumatologist says unhelpful things
Not only do many rheumatologists not understand what it is like to have psoriatic arthritis, but many also say things that are unhelpful and unkind. Members of the community have been told that exercise is the cure. One was even told that this diagnosis is a “fun” one to treat.
“New GP told me last week to join a gym and exercise. Sigh!”
“I just saw a rheumatologist for the first time. I do not have pain but have swelling and other symptoms. She said PsA was ‘fun’ to treat because there are so many options!”
“No. Definitely not. He is a dinosaur! Speaks to his team referring to me as ‘she.’ (I said, ‘Eh, hello, I am still here.’) Unfortunately, I do not have the option to change.”
My rheumatologist rushes the visit
It is a common problem in medical care that doctors do not take enough time to listen to patients. Most patients pick up on this and end up feeling rushed, which makes it even harder to talk about what is going on with their bodies. One member of the community found it helpful to write a letter explaining and detailing her pain so that she had all of the information. Otherwise, she would be in her rheumatologist’s office and forget what she wanted to say.
“They are in such a rush to get to the next person, they forgot how to really listen. I was very frustrated at my last visit due to being rushed out the door after a 5-minute visit.”
“He is so busy being the only rheumy within a 5-hour drive. I think he cares, but he has no time. Shoos me in and shoos me out in under 4 minutes.”
“No, not at all. He spent all of 5 minutes with me during my last visit.”
Listens and helps
The good news is that about a third of the community feels their rheumatologists listen and take the time to find out all of the information. These people said their rheumatologists show kindness and compassion. For many people living with PsA, the challenge is finding someone who is nearby and either takes their insurance or has affordable rates.
“He is incredibly kind and compassionate with me. I have not always found this disease easy to accept, and I have found my rheumatologist to be deeply understanding of that. If he can help, then he does. If he does not, then it is either not necessary or he cannot.”
“She is a wonderful doctor. Listens carefully, examines thoroughly. She recaps the conversation when we are done to make sure we are on the same page. I am very thankful for her!
“Yes, my rheumatologist is amazing. She understands fully how emotionally and physically draining it can be. She always offers an open ear to any concerns I have. I salute my specialist. I could not ask for better.”
We appreciate your honest sharing about your rheumatology visits. Thank you for telling us how the frequency of visits affects your treatment.
We hope hearing from one another provides food for thought. By talking to each other, you can better understand your care and relationships with your rheumatologists.
Will you help others by taking our Psoriatic Arthritis In America survey?