When Healthcare Providers Do Not Show Understanding
If you’re living with psoriatic arthritis, chances are regular visits with your rheumatologist are a routine part of your life. In an ideal world, your rheumatologist will take the time to ask you about your symptoms and how you are feeling about your current treatment.
Your doctor may also want to discuss new treatment options with you or discuss steps to take to live better with your condition and improve your overall health. But is this always the case?
Being misunderstood by your healthcare team
For most people living with psoriatic arthritis, doctors are a necessary part of the journey. However, when doctors are unhelpful, it can be especially challenging to keep moving forward and find solutions. To find out just how common it is to have these types of issues, we reached out on the Psoriatic-Arthritis.com Facebook page and asked: “Have you ever felt misunderstood by your healthcare provider?”
More than 60 people responded. Here is what was said:
Not taken seriously by doctors
The overwhelming majority of people reported that their doctor visits brought them a lot of frustration. Many people shared that their doctors did not believe them when they shared what their symptoms were. One person wrote that she was believed only because she has psoriatic plaques and rashes every time she visits the doctor.
It should not have to be like this. People visit the doctor to get help, and the whole process would be much smoother and easier if doctors assumed their patients were telling the truth, especially about psoriatic arthritis.
“Yes. I switched to a female doctor after seeing a male doctor for years who told me it was from having 3 kids and that I would grow out of it despite all my symptoms. I now feel validated and understood and that women can have other ailments besides motherhood!”
“A doctor I was seeing treated me like I was making up the physically painful symptoms I was reporting. I changed insurance companies after that. Now I love my new doctor.”
“I feel I am never given the time of day.”
Made to feel stupid
It is interesting that several people in the community shared that their doctors expected them to already know a lot about psoriatic arthritis. When patients do not know what doctors expect them to, sometimes these doctors treat patients as if they are stupid, which is not helpful at all.
“I was made to feel stupid.”
“When I had my first rheumatologist visit, she asked me, Why did my other doctor think that I had psoriatic arthritis? Like I know!”
Doctor does not understand how it feels
It can be tough to open up and talk about symptoms to someone who does not seem to understand or care about how it feels to live with a disease. Instead, what would be nice is to get a sense that a doctor has empathy and seeks to understand how hard it is to live with this diagnosis.
“Yes. I do not feel like she understands what I am feeling. I cry almost every time trying to explain how I cannot do things that I used to do. I feel like she cares a little, but just does not get it.”
Feel judged by doctors
It is especially challenging to want to share personal details and information when we feel as if we are being judged. Several community members shared that they felt that their doctors were judging them, whether because they were asking for a different medication or because they had adverse symptoms, such as putting on weight.
“Mostly judged, as if I am purposely making the medication stop working!”
“This last time I reported significant weight gain on the newest medication (almost 30 pounds in 4 months). My doctor just looked at me confused, saying, ‘The medication is weight-neutral.’ (Almost like a ‘not possible’ look).”
Have had good doctors
A handful of people in the community shared that they have had wonderful, helpful doctors. They felt that their doctors listened, understood, and were able to prescribe the right medicines, making the visits feel worthwhile.
“I am fortunate enough to get to work with doctors and surgeons who have wives with autoimmune diseases, so they are wonderful about understanding and helping answer questions that pop up in-between my regular dermatologist visits.”
It's not easy. Thank you.
For a complicated condition like psoriatic arthritis, it’s important to make the best of this time with your doctor. But this doesn’t always happen. If you are frustrated with your healthcare team - it is okay to look for new care. Let go of the guilt and find the strength to be your best advocate. You and your health deserve it.
We want to say thank you to everyone who shared for this story. It is our hope that people in the psoriatic arthritis community feel relief and comfort knowing that they are not the only ones to have these experiences.
Do you have any questions about life with psoriatic arthritis?