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 MoreHealthcare providers may be aware of the presence of yellow flags in a patient’s history, such as a major accident, depression, catastrophization, or prior trauma or abuse (to name a few), but not consider it related to the patient’s clinical presentation of pain. But it is. Prior pain experience shapes pain perception.
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 MoreSometimes, I leave a doctor’s appointment and think “gawd, that was an awful experience.” And for most patients, bad experiences equal bad doctors. The doctor may be brilliant, published, and well-respected, but if she’s rude, condescending, or freaks me out, she gets a failing grade from me.
Read MoreI think we as patients would often be better off with no medical intervention. Because not all "intervention" counts as healthcare. And yesterday, while I saw a doctor and received an exam and had some tests run, I wasn't cared for. And it felt like shit.
Read MoreExercise feels good, it’s empowering, and it’s taught me to be in-tune with my strengths in a way I didn’t realize possible. I’ve formed friendships, gained confidence, and found community. And, had I listened to those providers who long ago told me I should live more gently, I would’ve missed out on the entire experience.
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 MoreIf you’re a provider who treats those who hurt, I urge you to stay above the chaos of pain’s wrecking ball. You need to remain logical, focused on the end-goal and the pain science and the sensitivity of the patient’s nervous system. You need to be willing to refer patients to other providers. Be careful not to attempt treatments that are likely to worsen the patient’s suffering, simply because you’ve exhausted all other treatment modalities.
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 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 MoreMy first period was dreadful from the first drop. I grabbed several pads and headed to my room with a tear-stained face. For the next few hours, until my mother returned home, I checked my underwear every few moments. Each time that I saw blood, I changed the pad. I think I probably changed it every 20 minutes until she came home. I had no idea what I was supposed to do and was woefully unprepared for this moment.
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!”
Read MoreIn 2011, I lived in New Mexico and was navigating the challenges of law school, as well as ongoing pelvic pain (which, at that point, I was simply ignoring for lack of available care). Facing mounting stress, I started developing GI issues (big surprise, right?). So, I made a doctor's appointment (crazy idea, huh?).
I wrote this letter to the hospital's patient advocate after my appointment that day. It tells the story from there.
Read MoreWhen I got my first IUD, it was with a rotten doctor and no compassion.
It was December of 2010, I’d just finished my first semester of law school, and my gynecologist told me it was a simple in-office procedure. I picked up my cervix-dilating medicine at the pharmacy and followed the instructions exactly. I had also asked my doctor about pain meds for the procedure. She said none were necessary but I could take something of my own if I wanted. I brought an old bottle of Vicodin.
Read More"When was the first day of your last menstrual period?" Every woman who has gone to the doctor for any reason can relate to this. Upon your first interaction with the nurse or medical assistant, you're asked a series of questions, usually while they take your blood pressure, and they ask about your LMP (last menstrual period) in a monotone way. If you hesitate, they hand you a mini-calendar.
Read MoreWe imagined that I'd receive some sort of gold-gilded trophy with a woman standing triumphantly in her underwear. I'd successfully mastered several dynamic challenges.
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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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