Patient Leader Certification: What's Your 60 Second Pitch?

Hi, I’m Megan. I was diagnosed with lupus when I was 17, and like most of us, I spent years pretending I was fine—even when I wasn’t. I pushed through flares, pain, and constant uncertainty while trying to live a “normal” life.

Now, after 25 years of navigating this rollercoaster (with a few extra diagnoses like Sjögren’s, RA, fibromyalgia, and shrinking lung syndrome along for the ride), I’ve finally started talking about it—for real. The emotional toll, the weird symptoms, the tiny wins, and all the things no one prepares you for. I created my digital platform, Talk Lupus to Meg, to share what I’ve learned—and to help others feel less alone in their healing.

What I’m most proud of? Unlearning outdated mindsets that told me to be quiet, grateful "it's not worse," or “strong.” I’ve stopped performing wellness to make others comfortable. I speak up. I rest. I ask for what I need—and I hope to help others do the same.



Highlight of my week? Recovering from an epic Vegas girls’ trip with electrolytes, magnesium baths, and every single tool I’ve picked up along this healing journey. And a massage. Obviously.

I’m here to make space for the messy middle. To say: you’re not too much, you’re not making it up, and you deserve support that actually gets it.

Hi, I’m Janet Plank, how are you? I read your story and want you to know that you aren’t alone. I’m an advocate with the Social Health Network. I have been an advocate on my own site for 15 years. Others as well.
When I was first diagnosed with COPD, nobody seemed to understand. My network was family and a few friends. After time, I think part of the reason was because they didn’t want to hear or even see how it was affecting me. Pills and other medications were blamed, so I should maybe see another doctor. I did. That just added COPD to go with my asthma. You see, my family and friends couldn’t see it. I couldn’t either.
I checked out other COPD sites. Even acting like a fly on the wall, I didn’t feel right. Some people were worse than I was. On March 30, 2010 I was lost and didn’t belong.
I started a site called COPD Friends for Friends. I posted something like “I’m lost and have COPD. I need a friend. Do you?” Oh my they did come. Thankfully a couple of people who came advised me. Some became real friends!”

That’s the beginning of dealing with my struggle with COPD and other invisible illnesses. It is so hard when people can’t see our internal diseases, even some exterior, even when they can’t see the struggles to breathe.
I have COPD, asthma, and allergies. I too have difficulty breathing when I’m around scented products, they can take my breath away and even knock me down seriously. You too? How do you cope with your COPD? Do you feel that medication is helping? Are you using oxygen? I use it at night.
How do you like your doctor? Are you seeing a pulmonologist? How is your breathing? Is it controlled with your medication?
Do you have a support system?
I’m so sorry that your pain feels over the top. I do understand. Can I ask? Where is your pain? Is there anything that makes your pain better? I feel for you. The weather can make a difference throughout the body. It’s so hard to have pain that sometimes seems paralyzing. I have osteoarthritis, fibromyalgia, some scoliosis and more. I used to think I was tough, not so anymore. Pain can feel crippling. Physical therapy helped some, I do them now at home.
Yes, there is more. Thankfully, some surgeries have helped: Total knee replacement, both knees, both thumbs, gallbladder, hysterectomy with appendectomy, cataracts on both eyes, and a Nissen Fundoplication which slipped. I should have more done but I’m afraid to do the feet. It would help a lot if I can stick to my diet and lose some weight.
You must really struggle with yours. How do you cope with yours?
Here I am doing the talking and then asking you 101 questions. I’m sorry about that. You’re right, one thing does affect the other. I like to say, the knee bone’s connected to the thigh bone. One thing always seems to affect another.
Referred pain is when pain in one area, can be triggering pain in another. For example, coughing can cause pain in the chest, which can be normal. Coughing can cause pain in a persons side as well, causing him to think about gall bladder or something else. Pain in the back can trigger pain all over, it seems.
We have had a lengthy chat. It feels good to chat with others who care. You too? We will have to do it again real soon.
Oh, I’m an old lady of 70 that still tells myself I’m 50. lol you’re 55? Excellent! Yes, I need to get supper going.
Let’s chat soon, I’m always here for you, as are so many others. Just remember, breathe.
Always remember, you are never alone. It may take awhile for others to visit the site you have chosen, or the person that you are reaching out to, someone will come. There are so many people with other health issues that they have written about. Do a search. It’s amazing how people come together.
Thank you. 😊
Janet

Hi! I’m ShayLee Raye. I’m a patient advocate, nonprofit professional, and pageant titleholder living with multiple invisible disabilities—including Short Bowel Syndrome, an ostomy, and TPN dependence.

I use my experiences to raise awareness and make a difference—whether that’s through my job as a children’s advocate at a domestic violence shelter, running social media for national health nonprofits, or speaking at schools and conferences.

I’m also Mrs. Utah Petite 2025, and I’ll be the first to walk the national stage showing my ostomy bag and feeding tube, because I believe visibility matters. My platform is Invisible Disabilities; Visible Awareness—and I’m passionate about helping others feel seen, heard, and empowered, no matter what they’re going through.

Hi, My name is Sandy Weicher and I am a thriving Bladder Cancer survivor. Bladder cancer is the cancer that no one has heard of - I know I hadn’t. I was one of the lucky women - I had one drop of blood in my urine and my primary care doctor sent me immediately to a urologist. I was diagnosed with T1 High Grade Non Muscle Invasive bladder cancer. Because it was non muscle invasive, I was treated with immunotherapy (BCG). I was cancer free for 7 years and while I know that bladder cancer has the highest recurrence rate of any cancer, when I hit five years I thought I had it beat. Wrong! Right after retiring and moving to NYC at my yearly surveillance appointment with a brand new urologist, a tumor was found. It was the same T1 High Grade NMIBC, but more aggressive. We went immediately to bladder removal. There are three diversions to get the urine out of your body when your bladder is removed. The most common is the Ileal Conduit, or the external bag. I could not imagine having a bag of urine outside my stomach, so I was extremely fortunate to have a surgeon that did the other two options. He recommended the Indiana Pouch where he built me a new bladder from various parts of my small and large intestine. He then created a channel out to a stoma (opening) in my abdomen. I empty my new bladder with a catheter through that stoma at various times throughout the day. It is painless and simple. While the physical recovery of this major surgery was tough, the adjustment to my new normal was even tougher. I struggled to find people who had the Indiana Pouch to talk to and share with. A year after my surgery I started a monthly Zoom Indiana Support Group. It has been such a gift to me to have a community of people to share my journey with. I am passionate about young women (and men) understanding that blood in your urine is not normal, and is not a UTI. I am passionate about people having options for their diversion when they have their bladder removed. The Indiana Pouch is a great option and works very well for many of us. And, I am passionate about how impactful support groups are for people living in recovery, and if you can’t find one that fits your needs, do what I did and start one!