Restoring YOU Ep 07 Erin Jackson: Pelvic Pain
Listen in as Erin Jackson from Inspire Sante.com talks about her experience with persistent pelvic pain,the reality of traveling to find care for pain that persists and how her journey helped her discover a whole new life she never knew was possible.
Founder and president of Inspire Santé, a nonprofit dedicated to promoting awareness of pelvic pain disorders. Through the organization’s efforts, she empowers women to advocate for their own identities, bodies, and health.
Erin is an experienced and engaging speaker who merges her personal pelvic pain battle with inspiring policy solutions for women’s health, pain, and the patient’s healthcare experience. Erin suffered from excruciating pelvic pain for nearly 10 years, but through sheer force of will, she survived, graduated first in her law school class, and now fights to ensure that other women have a clearer road to recovery.
She has spoken at events across the country to break down taboos, advocate for patients’ voices, and empower women. Her past engagements include the San Diego Pain Summit and the American Physical Therapy Association’s annual conference, and she has been featured in prominent media outlets such as Prevention Magazine. Erin is also the managing partner of a boutique healthcare law firm in Chicago, where she collaborates with providers to improve the patient-centeredness of their practices.
Her Pain Journey
My pain began when I was just 19, but the worst of it came several years later, in my mid-twenties. I was a stressed out law student, and in my “free time,” I was planning a wedding and dealing with the attendant family drama, plus applying for jobs. Each week, I flew out-of- state to see a provider who specializes in pelvic pain, but I just got worse and worse.
Ultimately, I did graduate law school – miraculously as the top-ranked member of my class – but I wasn’t able to accept this incredible job offer I’d received to work for a federal judge. It’s pretty much the most desirable job a law student can receive, and I vividly remember the moment I realized that I wasn’t well enough to take it. I told my then-fiancé / now-husband: “If I can’t wear underwear, I don’t know how I’ll work in federal court.” I was devastated and embarrassed. After that, I realized that my out-of- state treatments weren’t helping, and I pretty much gave up.
One day, my husband quit his job and moved us across the country to my home, Chicago. He was confident there would be somebody in this big city who could help me. I’d lost everything: the ability to walk my dog (I was in a wheelchair), the ability to wear underwear (those wintry Chicago days are brutal in a skirt with no undies!), that job after law school, a sex life, the chance to wear whatever clothes I wanted… But more than all of that, I’d lost the ability to just live my life and focus on the experiences I was having in the moment. I tried my first case – I prosecuted a DWI and won – but all I remember is leaning on my podium in court, cross-examining the police officer who had arrested the guy, and being in excruciating pain.
The height of pelvic pain
On my wedding day, I was in a wheelchair, and it took all of my strength and perseverance to actually walk down the aisle and stand to take my marriage vows. There was a chair nearby that you can’t see in my wedding photos, in case I couldn’t stand any longer, so I didn’t need to have my wheelchair at the front of the ceremony. Everything was just something to get through or to survive. I never lived in the moment in a good way. I was trapped in each moment, focused exclusively on my pain. It’s a horrible way to live, and it robs you of your life and experiences.
My life took a completely different direction after I healed because I was a completely different person.
I don’t know that I “got back” any of the things that I lost. You can’t spend your twenties in that condition and then resume “normal life.” I’d never been physically active before, but I took up yoga, pilates, and rock climbing. I have a robust social life now. After I finished physical therapy and my pain was gone, I took a job as a corporate lawyer with a fancy law firm. I lasted a week before I realized that I’d fought too hard to get my life back to languish in a stuffy office from sunup to sundown. I quit and opened my own law firm with my husband, where we focus on health law. And I founded a nonprofit, Inspire Santé, to help other women battling pelvic pain feel less alone.
I was sick of being sick, and I was desperate to start living my life. I felt like I’d missed so much! While it felt really unfair that I couldn’t get that time back, I threw myself into enjoying each day. I really love the fact that I can go for a walk by the lake, play with my friends’ kids, practice yoga, play board games for hours with friends
Much of my pain recovery is premised upon Lorimer Mosely and David Butler’s ideas in “Explain Pain”. I used to ask my PT: “When will I stop fearing that the pain will come back?” And she always told me that nobody knows when that will happen. That it’ll come when the good experiences outweigh the memories of the bad ones. I picture this like a see-saw or scale. On one side are all of my memories of being in pain, and on the other side are all of my good experiences.
I keep trying to stack up instances where my body feels so good! Because I’m working hard to outweigh the memories of the bad days. I won’t say I’m entirely there yet. It’s scary, and it’s a long, long process. But I’m building a mountain of good feelings and memories,and I think I’m well on my way to having those outweigh the bad ones.
My life is 100% different than it was pre- pelvic pain.
When I had my first pain flare, I was 19, living in my first apartment, working my way through college, and single. When I recovered, I was 28, married, had moved back and forth across the country, had 3 degrees… I was totally different. I had changed my priorities, values, friends – everything. I’d grown up. However, I’d done so with pain. My “coming of age” experience in my twenties was totally different than my friends. Because of that I’d drifted apart from many of them, and my friends now are largely different than my friends from my early twenties.
I’ve bonded with women who are committed strongly to lifting each other up. Many are yoga teachers, healthcare providers, or women in the nonprofit or wellness spaces. It’s been a natural transition, but pain really changes your perspective on your social and familial relationships.
What’s Your life like now?
I think I have a lot more self-respect than I did when I was suffering with pain. It’s as if, when my own body was treating me like crap, I let people treat me like crap too. Once I healed, I realized that I wasn’t willing to accept that kind of treatment anymore. I found that I really shifted in terms of how I wanted my life to be filled with joy and love and laughter. As corny as that sounds, you really come to appreciate those things after living without them!
I don’t still have pain, but I do still have some apprehension of pain. I don’t even like talking about it, for fear that it’ll maybe alert the universe to the fact that I still have a weak spot – that fear. Recognizing this is normal and a part of my healing, helps. I continue to rely upon my talk therapist and my physical therapist as needed for reassurance and strength.
You’re unique, and so is your journey with pain, and so will be your recovery.
There’s hope, and there’s help. I think it takes a village to help someone in pain regain their sense of self. There are so many people who stand ready and willing to support you! Keep searching until you find the village that’s right for you. Each of us needs a different kind of recovery team. What works for one person may not work for you. That doesn’t need to be scary– it just means you haven’t found the right people yet.