My mother and I have been estranged for more than five years. While I was at my lowest point -- wheelchair bound, in excruciating pain, and suffering immensely -- she was critical and skeptical of my pain. That became intolerable, and my recovery ultimately required that I sever ties with her and work on rebuilding my emotional health and my strength. She's missed so much these past several years.
Read MoreConsidering the fact caregiving duties take up as many hours as a part-time or even full-time job for many unpaid providers, it’s often extremely difficult for them to prioritize self-care. But thoughtful gifts can help make their lives a little easier and even encourage them to indulge in a little “me time.” Here are a few gift suggestions for the deserving caregivers on your list.
Read MoreAnyone who’s battled chronic pain or invisible illnesses knows the chorus too well: “But you don’t look sick!,” or “But you look so healthy!” The way people look and the way people feel can be vastly different. And none of us should ever feel that it’s appropriate for us to comment upon, criticize, and judge the conduct of others based on outward appearances.
Read MoreWith the benefit of 20/20 hindsight and a joyously pain-free existence, I wish I hadn't given in so easily. I wish I'd searched harder for clothes that were both comfortable but also helped me retain a sense of me.
Read MoreI went from doctor to therapist looking for answers and nobody had them for me. It was devastating to say the least. Normal life had ended on some levels; I was a physically active individual who went from playing beach volleyball to not even being able to wash my own hair some days. I had two therapists, a chiropractor and a back doctor all managing my ‘recovery’ and I wasn’t getting any better, at all.
Read More“Being sick is your entire identity right now – by necessity. You go to the doctor, to physical therapy, to Walgreens. You spend your ‘free time’ doing your physical therapy exercises or intentionally trying to relax. The people in your life relate to you as a sick person – the way they interact with you is reflective of their awareness of your disability. When you no longer have that disability, it will change the way people see and treat you. It will change how you spend your time. It’ll change the entire focus of your day and life.”
Read MorePeople who live in pain spend a lot of time smiling. But those smiles are different – they’re directed at others, they’re forced, and they’re intended to make other people feel more comfortable.
Read MoreI’ve connected with many women around Chicago, holding hands across the table with them at Starbucks while we shed tears of sheer gratitude for the unique empathy and understanding we can offer to each other. I’ve giggled with them through mascara-stained cheeks as we wonder what nearby customers think of all this emotional vulva talk.
Read MoreMy months at the dog daycare were some of the most powerful in my recovery. When I started work, I struggled with the basics – keeping a routine, maintaining enough energy to get to work, and learning new tasks. The job was fun and challenging; it was manual labor, and it gave me confidence in my strength – and, importantly, in my ability to integrate my strength into my responsibilities. Previously, I’d kept the two separate: my responsibilities lived in my laptop, which I used from the security of the sofa; meanwhile, my strength lived at the yoga studio, but I didn’t push its limits outside those walls. This job, though, combined the two, and it taught me how to harness my energy and [literally] play well with others again.
Read MoreToday, as I ran from my physical therapist's clinic to my yoga studio, I was reminded of something that I can't afford to moderate: my courage. At one point, as I've shared, going to my PT's clinic ("my PT") for tune-ups was a challenge. I wanted to be "better," and I thought that meant "having no need for any medical intervention." As I've grown these past two years, becoming an athlete, a yogi, a 40-pounds-heavier, living, breathing woman, I've changed my mind. My PT is vital to my enjoyment of life, because she allows me to continue to be courageous. She'll be there if I fall (as she's demonstrated oh-so-many times before).
Read MoreFor years, my pelvic pain prevented me from having the fun, spontaneous, gloriously cliché 20-something sex that my friends were enjoying. You know – the kind of sex that they gushed about at brunch. Sex that was breaking their hearts and exhilarating their sense of liberated womanhood and adulthood. Sex that their doctors were lecturing them about. I couldn’t have that kind of sex because my vagina (and vulva and back and thighs) were excruciatingly painful. That was my dirty little secret.
Read MoreOthers’ judgment and treatment of me transformed my own beliefs about the legitimacy of my illness. I unintentionally invalidated my own body’s experience of pain, and I’d allowed those who chastised me for “taking advantage” to usurp my right to be treated decently outside the confines of my own home. In letting people like this dictate how I would care for myself while enduring unspeakable pain, I somehow lost ownership of my experience.
Read MoreSo you have pain with sex, or you leak urine when you sneeze, or you feel a bulge in your vagina, or you have chronic constipation or any other “down there” health concern. Where do you begin? Having suffered from pelvic pain and an assortment of related health issues for years, these are my suggestions for finding the right provider, getting the help you need, and speaking candidly about tough issues.
Read MoreI opened the driver door and was confronted with a wave of judgment and anger. The man yelled at me: “can’t you see we are still getting into our car? You’re not even disabled! You shouldn’t even be parking there!” I flushed with embarrassment and became shaky. And for the first time in my life, I yelled at someone in public. “You have no idea what you’re talking about. You know nothing about me!”
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”Inspire Santé”, “Hope Dealer,” and “Patients are people.” are all trademarks of ours. They stem from our founder Erin Jackson’s personal retelling and writing of her experience with pelvic pain. Words matter, and these are hers and ours. Don’t steal; it’s bad karma, and we’re trying to do good. If you use them, attribute them.
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