Advocacy is for Everyone

Advocacy is rooted in understanding and mutual respect. It doesn’t necessarily have to mean large gestures of support like heading to Capitol Hill. It can also mean speaking up when you have a question or voicing your concerns over the side effects of medication.

Anytime you bring your value and worth, as a patient, to the table of discussion, then you are advocating on your own behalf.

The importance of advocacy

I’m trying to teach my daughter at the tender age of 7, newly diagnosed with PsA, how to be her own advocate. She does her best to answer most of the questions the doctor has and is involved in every decision that we make regarding her health and management of her PsA.

That is really what advocacy is all about. Knowing your worth as a patient making sure your voice is heard.

Advocacy is rooted in mutual respect

I also try and teach her that you don’t have to be disrespectful to advocate for yourself. It doesn’t mean being argumentative or that your perspective is the only one that should be considered.

Advocating doesn’t mean tossing aside your doctor’s years of medical school any more than it means tossing aside your years of experience living with psoriatic arthritis. We need advocacy that comes from a deep-seated place of mutual respect for all parties involved.

Advocacy for psoriatic arthritis means equal voices in the discussion

Advocacy is about working together, as a team, with your doctor, insurance companies, lawmakers, and even pharmacies to make sure that everyone has a seat at the table and their voices heard. Psoriatic arthritis is a large and complex disease, as are the systems for diagnosis and treatment.

Advocacy is about respecting what the patient brings to the table and at the same time, valuing the larger “world view” that many other organizations have to offer as well.

Advocacy means being educated

In order to advocate, no matter if it is with your own rheumy or in Washington, you need to be informed. You need to be educated about your disease. This includes treatment options (or lack thereof), steps and stumbling blocks to diagnosis, and patient outcomes.

Luckily, we have faster and easier access to information than ever before. Being educated and informed means paying careful attention to your health and disease progression. You can’t advocate for yourself if you take a careless approach to your own pain management.

Know your rights

When it comes down to it, you need to know your rights. Specifically your rights to getting a second opinion, being informed about what you are consenting to. In addition to being informed about your right to refuse treatment and your right to access appropriate treatment options.

Unfortunately, at this point, we don’t all have equal rights when it comes to access to medication and healthcare professionals. But I truly believe with advocacy, we can work to change that.

Find your voice in the psoriatic community

Generally speaking, advocacy means, “an activity by an individual or group that aims to influence decisions within political, economic, and social systems and institutions.” But remember, that is advocacy on a grander scale.

True advocacy can be found anywhere on that spectrum from one-on-one with your doctor to a grand, worldwide stage. The important thing to remember is to find your own voice. And with mutual respect and understanding, we all might just make life with psoriatic arthritis a little easier for everyone.