Top 5 Psoriatic Arthritis Patient Responsibilities

Be Informed

With the wealth of knowledge and information available, literally at our fingertips, there is no reason why we can’t be informed about every aspect of our disease. What it is, how it works, and the ever-changing field of treatment options all fall under our responsibility to understand. If you don’t understand, ask questions. Your rheumatologist should (in theory anyway) be able to clearly answer your your questions.

Yes, being informed can be scary. You screen will fill with images of severely deformed fingers and worst case scenarios. It is very jarring and your first inclination is probably to close that browser ASAP. But take it slow, one piece of information at a time and use that information to make informed choices about your psoriatic arthritis.

Coordinate your care team

As the patient, you run “point” on keeping your care team informed about disease progression and working together. It is vital that you surround yourself with (to the best of your ability) caring professionals and a personal support network. Whether you choose a holistic, dietary, pharmaceutical, or a combined approach you will be working with multiple specialists. Coordinate your care team to avoid mistakes in care. If everyone is on the same page for your health goals, then everyone on your care team to work together to meet those goals.

Advocate

It is sometimes sad to say, but I’ve found myself in a situation where I felt like I knew more about my disease than the professionals whose job it was to treat me. Psoriatic arthritis is incredibly complex and while it is my responsibility to be informed about my PsA, my doctor or other medical professionals has to know about many more diseases. That is why it is so pivotal that every patient learns to advocate for themselves (in a respectful way, of course).

Being an advocate doesn’t just apply to the doctor’s office. Advocating for access to care (whether it is through insurance companies or your government) is just as important. Know your rights and advocate for them, after all, it is your health at stake.

Keep detailed records

Yes, it is a paperwork nightmare. You will probably spend millions on printer ink and xerox copies. But there will come a point in time that you will be SO grateful that you did. Do NOT trust any doctor’s office or practitioner to keep the records for you. Always get your own copies of all medical information. Take complete copies of records to each doctor or medical professional in your care team. Never hand over originals and keep your complete record (yes, a paper one AND a digital one) in an accessible and safe location.

Take care of your body

This last responsibility is a BIG one, and probably the one I personally struggle with the most. Obviously, take your meds as prescribed. For me, that’s probably the easiest. But what isn’t the easiest is practicing consistent self care. Saying “No,” when it is too much (without feeling guilty).

Feeding your body correctly and taking care of yourself is all part of your responsibilities as a patient. After all, we expect our medical practitioners to give us their best possible medical care, then why don’t we give at least that to ourselves? Why is that concept of treating our bodies well viewed as “selfish?” Take your meds and supplements, eat healthy, and make your body move at least a little each day. It is your responsibility to take care of your body to the best of your ability, if you don’t, no one else will.