We reached out to hear to learn a little more about her as well as how she’s managing her condition, which causes partial paralysis of the stomach. (As a result, food stays in the stomach longer than normal, and patients may experience symptoms ranging from premature fullness to nausea to unplanned weight loss.)
What advice does this popular blogger have for digital age patients? And how has PatientsLikeMe and the experiences of other patients helped her?Check out our interview with Mollee Sullivan below.
1. Where are you in your gastroparesis journey? What’s gotten you there?
It’s been just over a year since my diagnosis, and I feel like I’ve finally reached the point where I can say I’m managing my gastroparesis well. I know I still have a lot to learn, and I still have bad days, but I have many more good ones. There have been a lot of factors involved in getting me here: sticking to my low-fat, low-fiber diet; taking probiotics daily; exercising regularly; reducing stress; getting enough sleep; building a strong support system; and maintaining a positive attitude.
2. What have you gained from being a member of PatientsLikeMe?
I’ve gained access to a community of other individuals who have gastroparesis, and I have another tool for logging my symptoms, weight and treatments. It’s also interesting to see what clinical trials are going on for gastroparesis. I think PatientsLikeMe will become even more beneficial over time as more and more people join.
3. What’s the most important thing you learned from another patient with gastroparesis?
That it’s possible — and actually beneficial — to exercise when you have gastroparesis. At first, I was afraid I’d lose more weight or push my body too hard if I went running, but after talking with a woman who has gastroparesis and finished a marathon, I was inspired to get my running shoes back on. I completed a 10K this past spring and was able to maintain my weight; plus, I felt a lot better on the days when I went running. I’ve kept up a regular exercise program since then, and I plan to participate in the 10K every year.
4. What are your tips for living in the age of Health 2.0?
Get involved! There’s no reason to feel alone with gastroparesis or any other health problem these days with all the blogs and online support groups where patients can connect. Unfortunately though, some forums seem to be overrun with whiners, so use positive, reliable sites (like PatientsLikeMe) and find people on them who are encouraging. And while it can be helpful to read about what others are doing to manage their illnesses, ultimately you have to do what’s best for you.
Finally, don’t try to diagnose yourself on the Internet — every time I did that, it told me I was either pregnant or dying. (I’m neither.)