Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus. Do not stifle the Holy Spirit.1 Thessalonians 5:18-19
My Hidradenitis Suppurativa (HS) is Back
Holy Spirit, what are you trying to tell me?
I’ve purposely tried to avoid focusing on HS as part of my health coaching business because I feel like if I focus on it, it will always be there—in a negative light. I really don’t want that.
Maybe a few months ago I should have taken the hint when at my first public speaking engagement my strongest connection to someone in the audience came through our common HS bond. I spoke with a small group of moms about budgeting and meals. Part of my introduction to the group included a brief description of my experience with HS and how it pushed me into the then taboo world of low-carb diets and how that gave me confidence that healing came from more than just doctors and medicines. The funny part was, this mom missed the intro but recognized what I was talking about by a few minor details that came up later in the group conversation. My heart broke when she asked if HS was what I’d dealt with, because only someone with HS would recognize the descriptions I gave… I knew she had HS before she even finished asking if it’s what I had.
Maybe the Holy Spirit is telling me this is where I need to help people. Maybe HS isn’t done with me… and maybe even though I don’t understand it… there’s a good reason.
What Hasn’t Worked for Me
Diet. Mainly because I like to eat! I tried grieving over foods I wasn’t supposed to have. Then I ate them. My HS persisted.
Will power isn’t really my thing. Because it’s ridiculous! Who wants to cut pretty much everything with flavor out of their diet. You? Google nightshades… cutting them out will get you started on ending delicious meals. Period.
My experience with a nightshade-elimination diet was years ago. I was young. Desperate. A little dramatic. In my mind great tasting meals weren’t possible without nightshades. Good food would be gone—the way of the dodo! Looking back, that’s not entirely the case, but anyone who’s tried an elimination diet knows what I’m talking about. Grief is most certainly a valid response when you’re faced with parting ways with certain—and dare I say even favorite—foods.
What Has Worked for Me
Water. Years ago when changing my diet to night-shade free didn’t help me, mainly because I couldn’t stick to the diet, I tried adding something instead of taking something away. I added water. To the tune of about 70 ounces a day. It helped, but only partly. If I had to put a percentage on it, I’d say it was upwards of 50%. My lesion felt 50% better! Without a doubt, 50% was a marked improvement! Unfortunately though, the water didn’t heal me. So much fluid every day was intense too—getting it down, and getting it out. I was constantly running to the restroom at work and felt self conscious about it. Long term I think I just got tired of drinking so much, so frequently. I did feel better, but such a high volume of water just wasn’t sustainable for me so I gradually trickled off. If I still had HS, and still needed something to help me, I’d make sure my water intake was high. Maybe not 70-ounces-a-day high, but additional water definitely helped me feel better.
Stress. Reducing my stress did the trick. This remedy took me by complete surprise. I hadn’t even realized that I was stressed! I had no clue that my stress level was out of the ordinary, for anyone, let alone for my body. Although I felt my lesion healing nearly overnight once my primary stressor disappeared, I’ve still got a pretty gnarly scar. Also, unfortunately, whenever I get stressed out… my new found knowledge that stress = HS seems to kick off a self-fulfilling cycle that inevitably ends with an HS flare up. I sometimes wonder, if I hadn’t made the connection between my HS and stress a few years ago, would perceivably-smaller stressors still cause me to have HS flares the way they do now? In other words, is my own mind to blame for my infrequent and lesser HS issues that persist today? I can’t remember the last time I had an open HS lesion. It’s been what seems like forever. But man, when I get stressed out, I can sure feel my scars getting tender again. Thankfully, none have broke open in my recent (going back a few years) memory.
Data Collection. I really want to learn. I’m a natural problem solver. I like to learn, so I can understand and improve or fix things. For me, I already understand every day life with HS. I’ve already heard doctors tell me, “The way your skin looks isn’t normal.” I’ve already dealt with the agony of HS over a period of years. Where I want to be is understanding what happens inside us that causes it. Sure, there’s the mechanics of what physically happens… basically a sort of infection that needs to exit the body. But, why? Why does it start. And more importantly, why might it stop? What are the commonalities in onset and decline across a huge array of sufferers? I’m not interested in masking or lessoning symptoms, frankly I want to find a pattern. What do all of us that have HS have in common? What do all of us have in common when it goes away? I just want to learn more about it overall.
When my HS was active, over the course of about a year or two, I went through multiple out-patient procedures to remove/treat the lesion that was my biggest issue. I gave up seeking medical help when my doctors—as a last resort—suggested skin grafts. The success rate of skin grafts ‘curing’ my HS was 50%. The risk was not worth it for me. It was several—long—years between when I walked out the door after that proposal to when my stress load tapered off and my body was able to heal itself.
The most perplexing part of my involvement with the medical profession came a few years after my HS went into ‘remission.’ I got a phone call from a researcher associated with the health system I’d seen for all of the out-patient procedures. The woman on the other end of the phone told me she was beginning a study on HS and wanted to know if I’d be interested in participating in the study. I was super excited to participate, but when I let her know my HS was in remission, the conversation quickly ended. As a researcher, wouldn’t you be interested in someone who formerly had the disorder you were studying? Even if I couldn’t participate because my HS wasn’t active, wouldn’t you at least have some questions regarding my HS no longer persisting?
Lord, if this post reaches one person, let it be the person that needs it most. There is hope out there. So many times I cried out to you to help me. I felt like there was nothing that could help me. No comfort anywhere in the midst of so much pain! Please Lord, rest my words on someone’s heart. Help my story give them hope! Shine your light in on what might be darkest corner of their life. Let them know they’re not alone!
Lord I pray with all my heart that you help those with HS end their journey with this horrific, debilitating condition. Lord please send people who’ve had their HS go into ‘remission’ my way. Please give me a platform to get those stories, the useful info, out to others currently struggling with HS. Lord, please make this happen!
God there is plenty of info on living with HS, but I don’t want to live with it. I want it gone! Out of my life. Out of the lives of other’s who think they’ll never get past it. Please help me!
I pray this in Jesus name!
Your Opportunity to Participate!
I would love to ask you the same questions I wish the Hidradenitis Suppurativa researcher had asked me! Do you have an HS story similar to mine? Were you once ruled by HS, and have since been able to leave it behind you? Praise be to God!
If so, I’d appreciate hearing from you! Please, get in touch with me! Share your story. Maybe the details you share will help someone else who’s not quite gotten past the worst part of their HS journey yet.