Patient Blogs | Psoriatic Arthritis
You've Got to Have Friends
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I was unlucky enough to get diagnosed with psoriatic arthritis before social media made even the most distant person seem close. I was still able to find out about my disease. I was able to learn about the treatments and medications and all the technical and scientific … stuff. But the one thing I didn’t have was someone, ANYONE, who had this same disease.

Heck, I don’t think I knew anyone around me that had arthritis of any kind. I didn’t know how to find anyone else who had arthritis either. Was I supposed to go up to strangers in the grocery store and ask, “Hey, do you by any chance have arthritis?” and wait for them to look at me like I just asked a complete stranger if they had a medical condition.

Eddie, why would you need to find someone that has arthritis? I’m glad that you asked. Yes, having friends and family that help and support you is great. When you are having a bad day, it’s great to have people in your corner to take care of you. However, they don’t know what it’s like to have this disease. They don’t know what it’s like to live with it, day in and day out. They don’t know what it’s like to advocate for you and your disease.

I have been lucky and blessed to find others with arthritis and other rheumatic diseases over the last 5+ years. It all seemed to happen a bit by accident and maybe a bit because it was supposed to. It all started when I decided to participate in the Arthritis Foundation fundraising walks. The then-director of the Arthritis Foundation recognized my name and got to know me. He then knew of an opportunity where a psoriatic arthritis patient was needed for an American College of Rheumatology conference and thought of me. There, I met the director of patient-centered research for the Global Healthy Living Foundation, who asked if I would be interested in being a patient governor. From there, I finally got to meet so many people with arthritis. I got to meet them in person, talk to them, talk with them, and learn from their experiences. I will talk about a few of them in a moment.

Back to the social media I mentioned in my opening sentence: I now can reach out to people all across the country and the world. Facebook has a number of groups for people with psoriatic arthritis, people who take specific arthritis medications, and so on. I have recently joined the WebMD psoriatic arthritis group, and it is great. I’m not just saying it because this is a WebMD blog; I’m saying it because people reach out with questions about their disease, especially those first diagnosed. People ask about symptoms they have. People also share experiences they have. When you know the people in the group have the same disease, even though they may not have exactly the same journey, it helps.

I’ve also found Twitter to be a great resource for arthritis knowledge and outreach. I will tweet out my thoughts, my questions, my frustrations and use #psoriaticarthritis, #arthritis, and #psoriasis as my hashtags, and people see them. I’ve had people reply. I’ve had direct messages. I’ve had likes. I’ve also used those hashtags to see what’s going on in the arthritis, psoriasis, and psoriatic arthritis communities. It’s good to see other folks who are on this road. It’s good to see what sort of advocacy and fighting they are doing.

Finally, I want to go back to the folks I mentioned in an earlier paragraph. (You’ve probably discovered I like to jump around in my thoughts. Thank you for following along.) I met all three though my advocacy. Kelli ended up at my table at dinner one night. It turns out, she also had psoriatic arthritis. I thought, there is at least one other person on this great big Earth that I’ve met who has the same disease. We still keep up and compare notes about our medications or symptoms. She has arthritis worse than I do, and I have psoriasis worse than she does. She has reached out to me when her psoriasis flares, which is rare, so she needs help dealing with it. I also met Shelley and Kristine while serving as a patient governor. We commiserate with one another when we have a bad flare. We’ve discussed our treatment plans. We’ve griped about dealing with insurance. We’ve listened when one of us has had a bad interaction with a doctor. All three of these great ladies I count as friends, and I know I can count of them for advice, friendship, and experience.

Psoriatic arthritis, and arthritis in general, is a very difficult road. All of our journeys are different, but it still helps to have someone who has been down this road as well.

 

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Photo Credit: Thomas Barwick / Stone via Getty Images

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Eddie Applegate

Eddie Applegate

Diagnosed since 2003

Eddie Applegate was diagnosed with psoriatic arthritis (PsA) in 2003. His job has involved working behind the scenes in TV ad sales support for over 20 years, but his calling has become sharing his experiences with PsA to help others with the disease. When he isn't working or sharing, you can find him doing crosswords (the more difficult, the better), reading, watching movies, or cheering on his beloved Atlanta Braves or Alabama Crimson Tide.
 

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