How You Felt Right After Your Psoriatic Arthritis Diagnosis
There is no one way to feel when you find out you have psoriatic arthritis (PsA). Some people feel a range of emotions all at once. Some people feel one thing and then, with time, feel completely different than they did when they first heard.
Feelings straight from the PsA community
To find out more about how the community reacted when they first heard, we reached out to community members. We asked followers of our Facebook page to complete this prompt: “Finish this sentence: When I was diagnosed with psoriatic arthritis, I felt _______________.”
More than 100 community members shared. Here is what was said.
Feeling confused after psoriatic arthritis diagnosis
Many community members shared that before they could feel anything else, they felt confused. This makes sense. So often, the first time someone learns about psoriatic arthritis is when they find out they have it. Many people find that they need to learn more and do their own research to be able to move forward.
“Confused regarding my future.”
“Confused. I had never heard of it and had no idea what to expect.”
Feeling devastated by a PsA diagnosis
Many people, felt so overwhelmed by the diagnosis and as though life stopped. In a way, it has. The life as you knew before is gone. After diagnosis, your daily life will most likely look different, but most people, with time, find that they learn to accept and live with psoriatic arthritis. Life most certainly goes on.
“I was devastated because I did not know what it was or anything.”
“Devastated for the life I now have to lead and the problems it has caused with my relationships with those closest to me.”
Angry that it took so long to get a PsA diagnosis
Yes, it is helpful to finally know what you are dealing with, but it is also normal to feel angry that you had to see so many doctors and undergo tests to finally get a correct diagnosis.
“I was also upset because I have been told a lot by multiple doctors over the years that they did not know what was wrong with me and to just ‘deal with it.’”
Validated to know that there is a name for these symptoms
Sometimes people feel comforted and validated to find out there is a name for what they have been experiencing. These symptoms are real. Sometimes it takes finding the right doctor to receive a diagnosis.
“Heard. Finally, someone listened to what I was feeling, gave it a name, and a plan to treat it.”
“Validated. Since my son was already diagnosed with psoriasis and psoriatic arthritis, I was sure I had the same diseases, even though mine were less severe at the time.”
Relieved to start learning how to manage PsA diagnosis
There is a community when people reach out and connect with each other. There can also be a relief of symptoms. Some people choose to take medicine to reduce inflammation and swelling. No matter what you choose to do, there is relief in knowing what you have and knowing you have options.
“Relieved because now I understood why I was having so many issues.”
“Relieved. Excellent rheumatology nurse explained it all. Caught early. Good response to medication and it was before Google so I just got on with it and worked around my condition.”
“Relieved to finally have an answer for what was going on with me.”
Thank you for sharing!
A diagnosis is many things, including a path forward. Before your symptoms have a name, there can be a lot of fear and imagining worst-case scenarios. It is also common to feel hopeless before diagnosis because you do not know how to deal with something that does not have a name. Then, when diagnosis happens, there is understanding.
Thank you to everyone who shared their experiences with us. We are so grateful for such an active community that cares about helping one another.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?