Tanya's Story

I never thought I’d be so happy to go to work every morning! But, when you’ve spent a few years in extreme pain, and then not able to work because of increasing disability, surgery, and long healing, you realize how wonderful the common, everyday annoyances can be. It’s now my second week on the job, and my boss is so surprised by how joyous I feel. She would understand better if she knew what tunnel I have traveled through, and I thought all of you still suffering might appreciate reading that there is indeed light at the end of the tunnel. Keep traveling, keep fighting for yourself, and you will prevail.

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Nothing prepared me for the profound isolation of undiagnosed illness. The incessant symptoms are hard to explain to friends and colleagues, especially without a medical label. Names, even scary names, provide legitimacy and authenticity. Diagnoses, even rare ones, offer a path that people can point to and pursue. But having symptoms without answers for months on end makes one feel emotionally alone, mentally lost, and physically depleted.

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When I was eventually diagnosed with a rare medical syndrome by an emergency room physician, I was afraid but ecstatic. I could finally tell people that I was not making it up, that I truly was sick with something real and something significant. I realized that my illness was unusual when various specialists fit me into their schedules very quickly. It turned out that they were eager to meet someone with this “orphan” disease, as the National Organization of Rare Diseases calls conditions that are rarer than rare. But, it also turned out that these specialists were not eager to listen or learn from the rare patient with a rare disease. I found out after spending hours in multiple waiting rooms that, instead, they wanted to explain to me why my imaging was wrong, how the symptoms were all in my head, and, most glibly, that a year hence I would reflect back on this “phantom” pain and laugh. Instead, I cried.

Thankfully, my primary care physician and nurse practitioner helped me find a team of experts in another city who valued the mind and body connection and leveraged it to build good clinical outcomes not undermine patient realities. I traveled to meet with various team members over a two-day period of evaluations, testing, and conversations—not simply being talked at and lectured to but engaged in true dialogue. We all know compassionate care when we see it, and I had stared it in the face through the many faces of the MALS team members I met at that medical center.

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The surgeon listened intently and nodded affirmingly as I related every detail of my medical journey. Everything I had experienced, he assured me, was a classic presentation of the syndrome and laparoscopic surgery would have a 70% chance of helping me. But, he reinforced, I could increase the chance of positive surgical outcomes by pursuing cognitive behavioral therapy (CBT). He had noticed over the years of focusing on this rare disease that patients who entered surgery with a stronger and more positive frame of mind had better and longer-lasting physical benefits after surgery. As a healthcare minimalist who hates even taking pain medication for a headache, I was filled with hope to hear a surgeon talk holistically about how we could partner together—patient and clinician, mind and body.

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Through their compassionate, collaborative care, every member of my MALS team truly transformed my life. I will be forever grateful to each member of the team for listening to me, respecting my patient's perspectives, and working together to ensure that I had a great clinical experience. Healing has not been easy, and it is only now 15 months after surgery that I am feeling close to “normal” again. Much of what I have learned during healing has been self-taught, and through sharing on MALS Pals, because there are so few clinical studies about post-operative issues. But I have appreciated that my Primary Care Physician, Physical Therapist, Dietician, GI doctor, and surgeon are all willing to help me and work with me to figure out how to get me back to my regular life! My biggest advice for anyone facing MALS is to build a team around you and be sure to include the “soft sciences” of physical therapists and nutritionists. I have gone to see both of them more regularly and with greater success than the “by-the-book” doctors.

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Over the past several months I have regained my energy, returned to regular exercise, accompanied my high school daughter on all her college visits, built new countertops for my kitchen, renovated my garage into a “she shed” (happy to share photos!), hiked Yosemite, and found a new and much better job! Truly I have my life back, thanks to a supportive community, strong family, and persistence with the medical community.

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I know that I have a pre-existing condition that will always have the risk of returning, but I will never again feel afraid or alone because I now know that I have my own personal team, “Team Tanya,” by my side. You and your loved ones can get there too! Sending love and best wishes to all of you.