Not My First Rodeo
By Natalie Boyle, CEO and Founder
From her blog www.gritwithglitter.com
On Thanksgiving we had a lovely dinner with friends and went to see a movie, but we didn’t make that decision until a few days before, because this year we aren’t making holiday plans in advance. Unfortunately, we just don’t know what I will be physically capable of over the next few months. This is far from the first time that my body can’t do all the things my heart wants, but even though the feeling is familiar, it is a real bummer.
If you have been following me or Annie’s Place, you have probably heard about some of my continued health issues. In general, I have been very open about my struggles and writing about them helps me process. But this time, even some of my closest friends will be surprised to learn that I have been dealing with a new diagnosis for more than 7 months.
Hidradenitis-Suppurativa (HS) is an incurable degenerative autoimmune disease that causes painful tunnelling cysts in “folded areas” of the body- especially in the groin and underarms, and because of this diagnosis, in the last few months I have already had two surgeries and am probably looking at several more.
I don’t mean to brag, but when it comes to being medically interesting, I have a rep to protect. After all, I won the award for the “Most Broken Elbow” by the Texas Hand and Arm Center. Well, it wasn’t so much an award but a bunch of people coming to ooh and ahh over my X-ray. And I am keeping up with my trend by having HS, which only affects about 1% of the population. Of severe HS cases, only about 6% ever get a fistula (the complication I am currently dealing with.) On top of that, all the specialists I have talked to have never heard of a patient with an HS fistula that also has a j-pouch, let alone treated one. Again- not a contest- but if it was...
So why am I talking about this now? And why didn’t I share sooner? After all, as I went through so many of my health challenges over the years I wrote openly and vulnerably on a blog for the world to read.
But this felt different. I didn’t really tell anyone how badly I had been suffering until it reached the point where I was in and out of surgery, and even then, it was just a few people.
As someone who generally over-shares my extensive medical history, why was I keeping this one a semi-secret? And yes, part of it was just good ole’ denial “If I don’t talk about it, it doesn’t exist” kind of stuff. But if I am being honest, even I get a little embarrassed talking about cysts on my lady parts.
But then I found a study showing that people living with HS had extremely high rates of anxiety, depression, and social isolation. And that broke my heart. Because I know how lonely it is to have an invisible illness, particularly if you are also trying to hold strong for the little ones that depend on you. Yes, Annie’s Place is for the children, but even more than that, we are here to bring hope, comfort, and community to parents as they navigate stressful and often isolating health conditions. So, if I have to shout about my stupid cysts from the rooftops so that even one other person hears it and feels a little less lonely- that is what I am going to do!
“Yes, Annie’s Place is for the children, but even more than that, we are here to bring hope, comfort, and community to parents as they navigate stressful and often isolating health conditions.”
Once again, I find myself in a position where I am going through something kind of terrible, but I am also blessed beyond measure. My kids are older now (they even “volunteer” at Annie’s Place,) I have an amazingly supportive family and community, and I know that if I have the chance to help someone else not in spite of, but because of my suffering, that gives me a light to focus on when I start feeling sorry for myself. That is why I am using my story to kick-start an awareness and fundraising campaign for Annie’s Place called Breaking Stigmas, Building Hope.
Far too many of us are living in constant pain, with conditions like fibromyalgia, or endometriosis, or Lupus, or any of a million invisible disabilities that we are taught to hide if we want to get ahead. Because you don’t get promotions if you seem weak. And sometimes because we agonize that if we let our guard down, it will scare our kids. That it is better to pretend that all is fine than to put them through seeing all the doctor’s appointments and the treatments.
Natalie as the Giving Fairy at Annie’s Place
But I will tell you that after over 9 years of doing this work, our kids already know something is wrong. That we aren’t as good at hiding it as we think. That is the reason that we designed Annie’s Place to be so fun! Why we have a Play Therapy program so little ones can express their big feelings. And why we text our parents a picture each day of their child and send home their crafts. Because as I know intimately, it is only when my kids are ok that I can focus on my own health.
Oh, and by the way, if you are one of my invisible illness siblings, know that I you aren’t invisible to me. I see your passion, and your fire, and your super-human ability to push through pain that would have most people on the floor. Those of us who have literally had to come face to face with the reality that we may not have as many healthy days on earth as we want, tend to work a lot harder to make sure we make a difference with every moment we have.
Please consider being a part of our Breaking Stigmas, Building Hope campaign. A donation of any size will allow Annie’s Place to continue providing free childcare so that parents are able to be supported in their health no matter what the condition. We will be featuring a variety of stories from our families, staff, volunteers, and friends all month. If you would like to share your invisible or stigmatized illness story you can comment here, or share this post to Social Media and tag us with a note about why breaking health stigmas matters to you. We are @anniesplacecares on Facebook, Instagram, and LinkedIn.