Why Do I Advocate?

Hard question: Do you ever think about why you advocate?

I ask this question and I really want you to think about it. What does it mean to advocate? Do you advocate for yourself? A friend? Family member? Do you advocate for a cause? Are you hoping for a change? What is the outcome you would like to see?

Advocacy: The act or process of supporting a cause or proposal

Definition from Miriam Webster suggests that you support a cause. Are you your own cause? I get wrapped up in the world and I tend to forget about myself. My world of worry is about my family, classes, and work. When you see your physician, do you speak directly with him or her? Do you remember to be honest about how you feel? What about being transparent with your pain? Being the only you there is, it is your duty to look out for yourself. You can’t be something for everyone else when you are running on empty.

The importance of honesty

When I walk into my doctor’s office, I let him do the exam, but then proceed to speak to him about my needs. I already have an idea of what I want to be the outcome. A few days prior to the appointment I began to think about how I am feeling. What is working? Is there something not working? What kind of advice can I get about my condition?

I keep a note of all these things and formulate some questions about what I would like to talk about. Being organized with your writing helps the appointment stay on target. Honesty is often hard for folks, but in order to get the best result of your time with the physician, it is the best choice. Most doctors only allow ten to fifteen minutes per appointment. This means you need to be ready to act.

Caregivers as advocates

Supporting someone who has an autoimmune disease can be just as much of an advocate as the patient. There are times when the patient feels stuck or disappointed with a treatment. When someone comes into the picture to rally us on or support us, that’s advocacy. Support is vital for the patient. Knowing when they are running out of strength and remembering there is someone in their corner, it serves as a beacon of hope.

Just hearing someone out who has a disease is a great thing. Sometimes just keeping a person company is enough to give them a break and restore them. Being a caregiver is an important role. Remembering to keep yourself available is tough, but it’s often finding a well of water when the patient is in the desert on a walk. What most patients need is a supporter that is up to date on the treatments. We love feedback in educated ways.

What do you expect?

Many of us look for help in fighting for our medication. It's hard being told we must go through steps of failing medicine first. Do you want that to change? Ever wonder how you can make a difference? Do you want to advocate for that change? Reach out to your local government and ask them to change laws. Some will give the classic response and say they will fight for doctors to "hear" you.

How often do you have to put your foot down and insist that your doctor listen to all you have to say? Be firm and stand up for that change. Do not just take for granted what your doctor is saying. Check out their suggestions with some research of your own. Make suggestions! Ask questions like: "How do you feel about this option?" or "Could this option seem like a good fit?"

Can I change my mind?

Returning home after a doctor's appointment can give you time to think. Research can be done on your own time. By chance, you may have further questions, don’t let them go to the wayside. Email, or call your doctor. Discuss it with the nurse, or physician. Do not say yes if you are uncomfortable. You can always change your mind. Now it goes without saying that a doctor is a very busy person, but you should always be fully aware of what you are signing up for.

What happens if I stand up for my psoriatic self?

Your care can rise to different levels. You may be able to change the way your doctor sees you but it's important to not let your doctor dictate your treatment plan. Be informed and be sure they know you have the power. Advocacy starts first with yourself.

Your advocacy can become a greater need when you reach out to lawmakers, it starts a pathway or joins others who may be in the same situation. Fighting for your own care and for others makes you an advocate with a goal in mind. Now let’s see if you can make your desired outcome your reality!