Michelle is a MALS patient from Dallas, TX. She graduated from Texas A&M University in 2016, and hopes to return to school and study physical therapy. Michelle authors the blog "It's Not IBS", where she shares the positive insights, lessons, and medical tips learned from an ongoing intricate health journey.
Here is a taste of her blog:
Crises can be very uncomfortable and awkward for people not directly involved. You want to help, but you aren't quite sure how. Where is the line between helpful and intrusive? At what point am I being insensitive or overbearing? How do I contact the person experiencing a crisis and offer support, without reminding them of what they are going through?
I sure wish I was better at answering those questions. I wish I could tactfully and empathetically offer support to anyone in any crisis. But I can be awkward, and I always overthink things, and I tend to not speak up enough even when I really want to. So I have no idea what most people would find comforting in their darkest days. But from my pretty intense experience of trying to keep my body functioning, there were a few things that always provided comfort.
Even on the days where my insides felt like they were being ripped to shreds then hardened into a statue, and all I could see was a "fun house" blur of a world from nonstop visual distortions, and my body trembled and bottomed out from hypoglycemia, and I was on fire in a 60 degree room, and I was terrifyingly weak and malnourished... TO READ MORE CLICK HERE
On a personal note, I would like to thank Michele for bravely putting her experience into words so that others like her can find support and validation. MALS is a rare disease; additionally it is an invisible disease. Physicians, friends, and family have a difficult time understanding how someone who appears healthy on the outside struggle daily with pain, malnutrition and decreased energy. The pain is complex in that it is multifaceted affecting the nerves, blood supply, and our basic anatomy. Treatment varies on the individual, surgery is a successful option for many, for others the condition becomes chronic. More awareness, education, and research are needed. Again, thank you, Michele, for your advocacy, it is appreciated!
Kari Ulrich RN
Rare Disease Patient/Advocate
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