I can’t say I’ve always been an engaged patient.
Growing up, I believed that doctors knew everything and anything they said I should follow to a T. As I matured and began learning more about health in general, I realized how important it was to stake a claim in the ownership of my health as well. Doctors are important in making treatment decisions and guiding us in the management of our conditions, of course. But they are not the be-all and end-all.
Doctors are often under an incredible amount of stress. Health plans, insurance companies, and pharma companies are breathing down their necks, influencing a lot of the care that we receive. Because of these pressures, they’re not always able to stay up-to-date on the latest trends and treatments. They’re not always active within the disease communities or consisent about talking to patients and getting firsthand accounts of how things are (or aren’t) working.
These days, we truly have the advantage as patients. Having 24/7 access to the internet, we can stay up-to-date on the newest treatment options, regulations, and other information related to our disease.
From 2012-2016 I was on disability for a myriad of reasons, including avascular necrosis and psoriatic arthritis. For a long time, I went to my doctor and every new symptom I had was met with a new prescription. It got so out of hand that at the height of it all I was on nine different oral medications and two injectables. I knew there had to be a better way to manage my condition.
Turning to Mr. Google, I started searching for other patients, blogs, social media accounts — anything. I wanted to see what others were doing to manage their flare-ups and to get back to living a normal life.
Soon I came across dozens of patients talking about their real-life experiences. Which treatments they had tried, which worked, and which failed. I also learned about alternative treatments they used to complement their medications and so much more.
All of these experiences made me really think. I knew that just because one person had a good experience it didn’t automatically mean that I would. But the more research I did, the more I became informed and the better conversations I was able to have with my doctor.
I was no longer saying, “Help me, I have no energy,” but instead saying, “I’ve seen other patients try x, y, and z for their fatigue. Have any of your other patients tried those? And if so, how did they work for them?”
You and your doctor are partners when it comes to managing your health. This means that together you should make well-informed decisions about your treatment plan. The research that you do on your own can help facilitate better conversations with your doctor and allow you to have more educated discussions. Here are five ways to stay on top of your condition:
Follow the HealthCentral Facebook Page Here you’ll not only see the most current posts from the site but also have a chance to interact with other patients. Each month, “patient experts” write from experience and share their knowledge and wisdom with the community. This is a great resource. Maybe print out an article or two and take it to your next appointment!
Follow the National Psoriasis Foundation The National Psoriasis Foundation is always publishing information for patients. They partner with researchers and give grants to help push research further than before. They also have countless programs, like the One to One Mentoring program and the Patient Navigation Center. From their blog to their Facebook page, this is definitely a foundation to stay in contact with.
Follow bloggers There are a plethora of bloggers out there trying to help you connect with other patients. For starters, check out Being Me in My Own Skin, The Disabled Diva, and my blog, It’s Just a Bad Day, Not a Bad Life.
Connecting with others who are going through similar situations can truly have profound effects on your healing. You’re absolutely not the only one going through this, so learn from the trials and tribulations of others.
Join psoriatic arthritis and psoriasis Facebook or support groups The internet gives us the world at our fingertips! Did you know that there are several psoriasis and psoriatic arthritis groups out there that can help you connect with other patients? I suggest you check out Todd Bello’s Overcoming Psoriasis or Marel Pike’s Secret Psoriatic Arthritis Business group.
Set up Google alerts If you’re really interested in receiving the latest news on your condition, set up Google Alerts. By adding keywords like psoriasis, psoriatic arthritis, treatments, and biologics, you can get emails with articles alerting you of current news. This is a tremendously easy way to get information delivered right to your inbox!
There’s no wrong way to stay up-to-date on psoriatic arthritis and psoriasis news. The best thing is to pay attention to what is going on in the landscape and learn as much as you can. That way, if you begin to run out of options or your doctor isn’t sure about the best course of treatment, you’ll have ideas of your own!
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Julie Cerrone Croner is a Psoriasis HealthCentral Social Ambassador, certified holistic health coach, patient empowerer, yoga instructor, autoimmune warrior, and the blogger behind It’s Just A Bad Day, NOT A Bad Life. When she’s not empowering chronically fabulous patients to live their best lives, she can be found traveling, cooking, geeking out over health-related things, or enjoying life in Pittsburgh. Julie loves social media, so make sure to connect with her on Twitter, Instagram, or Facebook.