A Chronic Entrepreneur: Erin Jackson
Erin Jackson is many things – a woman who loves life, a woman with multiple degrees, an attorney and managing partner at Jackson LLP: Healthcare Lawyers, which she co-founded with her husband, a published author who focused her scholarship on the intersection of women’s health and human rights and the founder of Inspire Santé.Inspire Santé is a not-for-profit that works to destigmatise pelvic pain by opening up the conversation and supporting women experiencing pelvic pain through education and advocacy. Erin herself was faced with severe chronic pelvic pain for almost ten years, consulting multiple doctors until she finally began her road to recovery. Now, she’s helping others in that situation because she knows how lonely and frightening that journey can be, and how valuable and validating it can be to not only receive support but be part of a community of people who share similar stories.
What’s your Chronic?
I battled chronic pelvic pain for nearly a decade. What began as intermittent episodes of stabbing vulvar pain eventually morphed into years of unrelenting pain that rendered me wheelchair-bound.
Where were you when you were diagnosed?
Most women who experience pelvic pain bounce around between providers for years before receiving a diagnosis. My journey was no different, and I gradually chipped away at it until I collected a more dynamic understanding of what was happening to my body. Along the way, I had two formative experiences. The first happened while seated at my dining room table. I was searching for answers about my pain online, and I found a Dr. Oz video where he was explaining a condition called vulvodynia – which literally means “vulvar pain.” It was the first time I’d heard anyone discuss my exact experience, and I felt immediately elated that someone would be able to help me. The second experience didn’t occur for several more years, unfortunately. I saw about a dozen more healthcare providers in four different states before finally meeting my superhero pelvic floor physical therapist who ultimately helped me recover. She thought it was important that I understand pain and the nervous system, so she initiated my pain education at our early visits. As I began to understand how pain was mediated by my brain but experienced throughout my body, I began to internalise the complexity of my experience and was finally able to start recovering.
What makes you an entrepreneur?
I founded a pelvic pain non-profit two years ago, with the goal of bringing awareness to these conditions and validity to the experiences of the countless women who suffer from them. I felt alone and scared when I was in pain, and I couldn’t find any hopeful information that explained my condition or encouraged me that I would recover. I aim to provide that, and I’ve had to start from scratch. I’ve relied upon what I know – my personal experience – and upon my network to help me create a content-rich website that’s validating, educational, and hopeful.
I was an entrepreneur before that, though. Initially, when I recovered, I wanted to “get back” to my professional life. I worked briefly as an attorney for a fancy law firm before deciding to open my own firm. Informed by my experience in the healthcare community, my husband and I founded Jackson LLP: Healthcare Lawyers. We’re an entrepreneurial law firm in every sense of the word – we’re self-starters who work from co-working spaces in Chicago, Evanston, and Madison. We work with smaller healthcare businesses to improve the experiences of their patients and simplify their regulatory compliance. It’s awesome work, and it creates a great synergy with my non-profit.
What came first, the chronic or the entrepreneurism? How did this path come to you?
The entrepreneurism is in my blood. After my mum survived breast cancer at the age of 42, she wanted to spend more time at home with my sister and me. With my father’s help, she founded a medical education business and opened a home office. I grew up watching my parents run their business, so I feel like a lot of it comes second nature to me. My husband and I have jived on this too, as his father is very entrepreneurial and constantly pursuing new ideas and plans.
Also, once I got better, I lost my patience for being mistreated, under-appreciated, or marginalised. I knew that my ideas had value, and I understood that if I could weather and triumph over something as insurmountable as my pelvic pain, then I was definitely equipped to see my ideas to fruition. I think that my illness made me more appreciative of the present day, but also less risk adverse.
What do you wish you’d known before?
When I first started my non-profit and my law firm, I was nervous about growth. How would I attract clients or donors? What I wish I’d understood is that passion and enthusiasm attract that growth. My dedication to changing the experience of women in healthcare is obvious to those who attend my speaking engagements or read my blog, and those people often ask to do business with me or be involved in what I’m doing. I’ve learned that if I work to sustain and foster my interest in these topics and my energy, then the business and success really does follow. People have been so incredibly supportive of my work, and I’ve felt like my network has rallied around my endeavours and has been so anxious to lift me up.
Did you go through any sort of 12-stages of grief with the diagnosis or take it in its stride – how did the process manifest itself – did you immediately reassess your life?
I mostly experienced fluctuating anger and depression, and then ultimately hope as I began to recover. When I was suffering, I felt so angry at the healthcare providers who minimised my symptoms or told me they couldn’t help me – and even angrier at the ones who said they could help me but then whose treatments exacerbated my symptoms. The loneliness of the entire pain experience plunged me into pretty significant depression at times too. Sometimes I felt like giving up entirely on getting better. I just wanted to be left alone to wallow on the couch; continuing to hope for a future without pain was too much to ask. I didn’t really start feeling hopeful until I experienced a partial recovery with my physical therapist. The beginnings of a recovery fuelled my hope that I could continue to experience progress and get better, and things kept improving from there. This was a long, long journey though!
What would you say to your younger self?
Your resume and academic achievements and professional success don’t matter. Focus on your self-care. Seek out a therapist’s help earlier in this journey, have more compassion for yourself, and fill your life with people who are gentle, kind, and empathetic. Down the road, you’ll have taken your professional life in a direction that’s wildly different from what you’re working so hard for now, and it’ll satisfy you in ways you can’t imagine. Oh, and you’ll find yourself in the most loving marriage with an incredible man who is your best friend, your business partner, and has seen you through unspeakable challenges. So you can look forward to that!
How have you changed, if at all in your relationships, decisions, what you value?
The people in my life today are very different from those who were in my life pre-pain. I am less willing to tolerate mistreatment today than I was years ago – I think because I fought so hard for the health and happiness that I enjoy today. For example, I’ve had some tiffs in recent years with family members over petty things, and I’m unwilling to let people bully me, be nasty to me, or belittle me in ways that I totally tolerated when I was in pain, vulnerable, and low on confidence. Now, I feel like I deserve to be happy and treated with respect, so I demand that of those in my life. As is so often the case, the people who so richly colour my life are those who bring me joy and who challenge me; those who were bringing negative energy were the ones happy to fall by the wayside when things got tough.
My decisions are driven by the value I now place on my happiness and health, my marriage, and the present day. I value the opportunity to practise yoga more than working an 80-hour week, the chance to travel with my husband more than owning a big house, and the opportunity to share my story with other women in pain over putting the entire experience to bed. I’ve changed, but it would be impossible for my pain to not have that impact.
What advice do you have for others?
Stay hopeful. There are so many people who want to help you feel better or stronger. Find your people, and use them. Try hard to rely on others who show themselves to be reliable, too. Coping with a chronic condition is lonely enough, so if others want to help you carry the weight of this experience along the way, try to trust and let them.
What is your life philosophy and has this changed?
For me, happiness comes from engagement with other people and with nature now. I’ve become more interested in my yoga practice than my resume, and more excited about spending time with friends than catching up on my work. I continue to strive for balance between work and play, but when in doubt, I err on the side of play. I feel like I’ve earned it after so many years of suffering, but I also feel like life is too short to not live in the present. I hope that, through fostering happiness and optimism, I can help instil others with renewed energy and hopefulness too.
Are you on any treatments?
If I feel sore or restricted or inflamed, I’ll see my physical therapist. I’ve seen her twice this year, but it always makes me feel better. I also still see my talk therapist regularly, as she helps me continue processing this entire experience and its aftermath. I still take a medication that helps modulate my nervous system’s health, too – mostly because I’m not psychologically ready to stop taking it and feel reassured by staying on it, so my doctor is supportive of that.
What is a ‘bad day’ for you?
A bad day now is a mentally bad day. It’s a day when I get plagued by period cramps or sport-induced pain, and I feel terrified. I worry that my pain is coming back or that my recovery wasn’t genuine. These days are becoming very infrequent, thankfully, but they’re crippling. Sometimes they make me fearful of movement, activity, sex, or tight clothes. I need to literally force myself out the front door and into the world, and this anxiety can be hard to shake. The memory of my pain is still so vivid, so I’m desperate to avoid ever feeling that way again.
What do you do on a ‘bad day’?
I ask for reassurance from those whose wisdom I trust implicitly. My pelvic physical therapist has an incredible way with words. She’s funny and brilliant and gentle, and she always seems to find a way to speak to my insecurities and reassure me in a way that I trust to my core. When I need a jolt of confidence, I sometimes make an appointment with her for the purpose of getting that necessary boost. Sometimes it’s helpful to have her literally lay her hands on me so she can “feel” that nothing is wrong in my body, which I know will make me believe her 100% when she tells me I’m OK.
How do you deal with stress?
I do yoga. I feel so grateful to have found yoga in the early days of my recovery. Now, I cope with stress by getting on my mat and moving. It’s become the safest place in the world to me: my yoga mat makes me feel confident, able, and healthy. Spending time there, especially with friends or my husband, bats away the stress and makes me feel like the stressors facing me are manageable. Snuggling my dog Crosby also helps.
Who are your back up dancers?
My husband is my best friend, and I count him as my greatest supporter. He weathered my hardest years with me, and I am so immensely grateful to him for the love and tenderness that he showed me when our lives really, honestly, sucked. My others are my father-in-law, my physical therapist, and my girlfriends from yoga.
Best bits of being a Chronic Entrepreneur?
I love the autonomy of being an entrepreneur, the chance to work with my husband at our law firm each day, the corporate culture where I bring my dog Crosby to work each day, the flexibility to insert a yoga class into my daily schedule, and the opportunity to prioritise things like healthy eating, exercise, and family time. I so enjoy the chance to engage with women around the world about their own pelvic pain journeys, and I work hard to offer hope and validation that I couldn’t find. Through my law firm, I feel immensely excited about the changes impacting healthcare, and through our work, I’m able to tangentially help my clients improve the experiences of patients who visit their clinics and practices. I think that entrepreneurs can experience uniquely gratifying successes when their hard work pays off. I certainly have.
Worst bits of being a Chronic Entrepreneur?
Stressing over the nitty gritty daily details like money and ordering paperclips. But mostly the money part. I don’t enjoy invoicing law firm clients, but it’s obviously necessary to keep the lights on. I also hate fundraising for my non-profit, even though the money we raise goes to such incredible programming for women in pain. It’s actually not that I’m uncomfortable with the topic of money. No, it’s that there are so many other topics I’d rather talk about, and work I’d rather accomplish. Like most entrepreneurs, I don’t have a team of people to help with these types of business details, so I squeeze them in between the fun and exciting parts of my day.
Are you a 5-year planner or are you winging it?
I’m a planner, but I tend to deviate from my plans. Having a plan reassures me, but running afoul of my plans and running with new ideas excites me.
Dream weekend plans and have these changed?
A quick trip to San Diego, where I’ll meet some girlfriends who live out there for yoga, play in the surf with my husband and dog, and go for a hike. And this has changed in every way imaginable. Since I’ve recovered, I’ve taken up yoga, playing in the surf, and hiking. While I was still hurting, I couldn’t do any of that stuff.
Ultimate dinner party guests?
Michelle Obama would be an awesome dinner guest. Obviously, I’d love to meet her husband too, but it’d be cool to have some “girl talk” time with Mrs. Obama. I admire her public demonstrations of integrity, grace, and her incredibly impassioned commitment to what she thinks is good and right. She’s managed to raise two girls in the pressure cooker of the White House and the public eye, and I’d imagine that takes someone who is very confident in who they are and what they value. I think it’d be interesting to learn how she stayed true to herself even when naysayers had constant criticisms for her and her family. I’d also like to invite Dr. Oz and Oprah over for dinner and chat with them about my journey and pelvic pain. We need to speak louder and more frequently about these issues in the public sphere, and people listen to both of them. I think a bit of “pop health” goes a long way in educating the public about issues, so I’d love to figure out how to get that done.
What next?
The Santé Center: a retreat center for women where they can come to receive multidisciplinary care including mental health, physical therapy, medical treatment, and nutritional guidance. They’ll stay there with other women also undergoing pelvic pain treatment, so they’ll have one another to rely upon for support and understanding. We’ll bring a chef in to do cooking classes that emphasise anti-inflammatory eating, we’ll have therapy dogs hanging out in the living room, we’ll have a therapist guide a group discussion at dinner. Women will leave there better than they arrived. Plus, because just the women will come, their caregivers (often their spouses!) will have an opportunity to recharge their batteries. We’re developing self-care resources to help them understand the signs of caregiver burnout and to encourage them to seek mental healthcare too. This would’ve changed my life, so I’m excited about it.
Where can people find you?
On Twitter @healthy_lawyer
On Instagram @erin_k_jackson
Email me: erin@inspiresante.org
Inspire Santé website: www.inspiresante.org
Jackson LLP website: www.jackson-legal.com
Let us know what you think below and share your story with us on Instagram tagging @achronicentrepreneur and using the hashtag #achronicentrepreneur.
