3 Essential Skills You Need to Advocate for Yourself with Psoriatic Arthritis
Did you know that being an advocate and advocating for yourself are two different things? When we think of the word “advocate,” we often think about changing laws and making our voices heard in government and political situations.
However, being your advocate is different.
Our experiences matter.
It is an essential skill to develop when you live with psoriatic arthritis. Your voice, opinions, and experiences as a patient have value and are vital to making sure your voice is heard within your own healthcare decisions.
The number one best start to being your own best advocate is to be educated. Even though learning about the symptoms, side effects, and treatment options for psoriatic arthritis can be scary, being educated can help you be your own best advocate.
Yes, information can sometimes feel overwhelming, but it can also be empowering. If you understand how psoriatic arthritis works, you will be better equipped to work with your doctor (and often insurance companies) to advocate for the most effective treatment options.
Discern fact from fiction
Do your best to ferret out reliable information from authentic sources. A large part of being educated is separating fact from fiction. Much of this comes with life experiences of living with PsA.
But if you don’t understand the fundamental principles of the disease, it is too easy to fall prey to treatment scams and click-bait “snake oil.”
Brush up on effective communication skills
Part of being a good advocate for yourself is finding a doctor with whom you can develop a solid, trusting relationship. This is easily the most difficult yet essential part of being your advocate.
Finding a good doctor to work together with you and the rest of your healthcare team can be the difference between timely, effective treatment and crippling disease progression.
Develop a partnership or care team
You shouldn’t need to get argumentative or disrespectful with your doctor when you have questions or concerns about your psoriatic arthritis. You may not necessarily agree with your doctor’s assessment or even accept it as the final say. Of course, ask questions.
Voice your concerns. However, getting an argumentative and disrespectful tone prohibits you from being able to be your own best advocate.
It is easy to get flustered in the precious few minutes with our doctors. Not to mention the fact that I forgot to ask if I had a dime for every time I left the doctor just knowing there was something (or many somethings!). So the ability to communicate effectively is vital.
Know when to get a second, third, or fourth opinion
Much of what I share about having a good relationship versus a bad relationship is because I have personal experience with both. I was dismissed. I was treated poorly, and I would even go so far as to say cruelly.
But my symptoms forced me not to give up and continue searching for answers. Is that how it should be? Of course not. But for many of us with psoriatic arthritis, it is an unfortunate yet common part of navigating the journey.
In addition, you shouldn’t leave your doctor appointments feeling like your doctor didn’t take your concerns seriously. Or that your voice wasn’t heard. And you certainly shouldn't feel as if you were dismissed or belittled by your doctor.
Sometimes part of advocating for yourself is knowing when it is time to search for a different doctor.
Bring a friend
It is tough to think clearly and communicate effectively when you feel like garbage. One thing that can be helpful is if a friend or family member could go to an appointment with you. That way, you can have a second person in the room who can look at the relationship from a more objective standpoint.
With COVID limitations, someone “extra” in the doctor’s office is often restricted. A friend or family member can help provide additional perspective. And they can help you communicate your symptoms in the best way possible.
However, there are ways to add a friend or family member “virtually” or even simply on the old standby- the speakerphone.
Document, document, document
Yes, it is worth repeating 3 times. To the very best of your ability, being a good advocate for yourself consists in having all your ducks in a row. Sometimes advocating for yourself involves significant time, work, and organization.
I know it takes a great deal of time and effort to keep track of medical records, document your symptoms, and constantly have to follow up with insurance. But in the long run, it will be worth it.
But beware, brain fog is a real thing my friends, so don’t let it interfere with getting a timely diagnosis and effective treatment. I know our hands hurt, and our brains often don’t work the way we’d like them to.
Plus, we shouldn’t have to work so hard to get quality treatment. But sadly, it is the current reality and a system that we need to work with if we’d like most types of traditional medical care.
What experiences do you have advocating for yourself with psoriatic arthritis? Was your voice heard, valued, and respected?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?