I started writing this months before this COVID-19 crisis, and while I do want to address what’s going on in the world and how I’ve been boosting my immune system and staying sane, I thought it was important to get this post up first. Adrenal fatigue is a huge obstacle during topical steroid withdrawal, and I want to share the raw truth about my experience so you won’t feel as crazy as I have this past year, or at the very least know that you’re not alone.
As I sit here having mountains of trouble focusing on writing about my experience with adrenal fatigue and Topical Steroid Withdrawal, I wonder as I have millions of times before, am I being lazy or is my inability to focus a symptom of the illness I’ve been fighting for the past 5 plus years? That question could be the slogan of my 2019. Do I need a break or am I not working hard enough? Am I tired or do I just not feel like working? Is it me or is it me?
These thoughts have been the undercurrent of my life for longer than I’d like to admit. It wasn’t until I was lying in bed all day everyday avoiding contact with the outside world that I realized something was really wrong, and I needed to take action if I wanted to change. I reached a point of apathy I had never experienced before and wondered, “how did I get here, and why don’t I care about anything?” The particular weekend I’m referencing I turned off my phone to dodge reminders about a date with a friend and a singing gig for which I was a no-show. Monday rolled around and I felt more like a functioning human being, so I sent out the apology texts with my coveted, “I wasn’t feeling well.” Not a lie, but also a large leap from the truth, however “I wasn’t feeling well” always seems better than, “I fell down the depression black hole and couldn’t climb out in time to cancel plans.”
After this weekend of avoiding life at all costs, my therapist pointed out that I was displaying multiple signs of adrenal fatigue, she having dealt with it for years herself. It was confirmed at my new naturopath’s office a week later. I spent the entire orientation holding back tears, trying to keep it together enough to tell her my symptoms. She tested my adrenals by turning off the overhead light and flashing a flashlight across my eyes. With a healthy adrenal/stress response, the iris of one's eyes should contract for at least 30 seconds in the light. Mine contracted for one. My heart dropped at hearing how depleted my adrenals were. How long had I been pushing myself too hard when I really just needed to rest? How long had I been ignoring my needs? I got home and cried in the car, not knowing how to process the rollercoaster of emotions I was on.
I immediately started taking adrenal support supplements and quickly noticed a difference. I had more energy, but I was nowhere near back to a normal functioning level. I assumed everything would continue to improve with time, but what’s one of my favorite lessons that keeps coming back to haunt me—I mean—teach me? Healing. Isn’t. Linear. Pretty soon I was back on the rollercoaster, bouncing between feeling progress and not being able to get out of bed. One day I woke up and without even fully processing where or who I was, I started crying. The black hole moments were becoming more frequent and most days I couldn’t get to sleep until 5am or later.
I returned to therapy, unable to make sense of my erratic emotional state and lack of motivation. I was doing better, so why was I so sad? I immediately asked, “am I depressed?” She responded, “Yes, you’d probably be clinically depressed. But what even is depression?” Not the response I was expecting, but she continued, saying my emotional rollercoaster was still linked to the adrenal fatigue and my body not functioning properly. She also opened my eyes to the vicious cycle I was stuck in: I was depressed and tired because of the adrenal fatigue, and as a result I couldn’t function at the level I normally did, which was depressing me because I felt inadequate.
It was a hard conversation to have, but I was finally able to take the blame off myself for my shortcomings. I’ve spent so much of this process just trying to do everything I can to expedite the healing process and feeling like a failure every time I couldn’t commit to a protocol or healing diet. What made it even worse was the last time I went through topical steroid withdrawal I was able to accomplish so much more. Cue Lauren’s brain: “You’ve done it before so do it again.” I couldn’t accept that my adrenal fatigue was much more severe this time around. I can’t express this enough: Topical Steroid Withdrawal is so much more than irritated skin. Topical Steroid Withdrawal is SO MUCH MORE than irritated skin. TOPICAL STEROID WITHDRAWAL IS SO MUCH MORE THAN IRRITATED SKIN.
As if the physical symptoms weren’t enough, the psychological trauma of TSW is real and debilitating: never knowing when your skin will be better or worse, the physical discomfort, the insomnia, the having to be a functioning human being when you literally feel like your entire body is falling apart. It’s brutal. The time that I’ve taken off to heal has been layered in uncovering negative thoughts and learning how to trust myself and how I feel. It’s been steeped in acceptance and finally being able to say, this is where I am and what I can currently do, and I’m okay with that. It’s been relearning that it’s okay to not be okay, and I don’t have to pretend to be okay for anyone else’s comfort (something I still struggle with).
I literally had to remind myself of the full symptoms of TSW listed on the Itsan site so I’d feel less insane. The following is directly from the website and I’ve experienced every last symptom:
HPA axis suppression, HPA axis dysregulation, and adrenal fatigue are all names for when one’s cortisol levels are off. Medical professionals have differing ideas on whether or not adrenal fatigue exists or if the term is correct for what’s actually happening in the body, but the bottom line is when cortisol levels are off one’s body does crazy things. What is cortisol? According to WebMD it’s “…nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear.” Cortisol is produced by your adrenals and is responsible for how our bodies use carbohydrates, fats and proteins, keeping inflammation down, regulating blood pressure, increasing blood sugar, controlling the sleep/wake cycle and boosting energy so we can handle stress and calm down afterwards. So if the adrenals are depleted, cortisol levels will be low, and all of these functions of the body are screwed.
Much of this process I felt like I was ill equipped to deal with the debilitating symptoms I was facing. 2019 was full of stressful situations, from the death of a mentor, to my mother fighting breast cancer (she's now in remission), to my own health battle. My weakened adrenals made each situation ten times worse. My body literally could not process stress, which resulted in mood swings, anger, depression, and apathy. On top of it all, it took me forever to accept that I wasn’t being lazy. I was sick.
Accepting that fact allowed me to actually start the process of healing, which has been happening in stages. So what have I changed to heal? When I'm tired I sit down and take a break. I allow myself to sleep however much I need to sleep. Instead of doing strenuous exercises which can deplete the adrenals when they're weak, I do moderate and restorative yoga. I do biofeedback breathing exercises. I take Gaia adrenal health supplements everyday. I've cut out caffeine which is one of the worst things you can consume for weak adrenals. I've also been repairing relationships in my life. I have a tendency to not speak up about how I'm feeling if it means I have to have an uncomfortable conversation, but instead of speaking up I hold on to negative emotions from unresolved situations. I've had a lot of uncomfortable conversations this past year, but the discomfort was worth it for my peace of mind. And last but certainly not least, I've avoided and reduced stressful situations in my life. If you think you're suffering from adrenal fatigue you can learn more from Dr. Axe here.
If you are going through Topical Steroid Withdrawal and feel like you can’t accomplish the simplest of tasks, you are not crazy! You’re body is healing from years of abuse so you’re not only going to experience physical changes, but emotional and mental changes as well. Our bodies have to learn how to function again, and the stress we’ve been putting our adrenals through is detrimental to our emotional health. Be kind to yourself, rest and listen to what your body is telling you. I tried so hard to muscle through my fatigue and ended up doing more damage. Don’t be like me. I hope this is helpful for anyone experiencing these symptoms, and I encourage you to start practicing meditation or mindful breathing exercises and yoga if your body will allow it. There is healing in calming the mind, and having the right mindset makes a world of difference in the fight for our health. Much love and prayers for healing to all of you beautiful people. Until next time!
4/15/2020 12:10:37 am
Hello! I landed on your blog while researching about TSW. I’ve had bad eczema before and it ended up coming back a few months ago. I recently learned about this healing eczema course that I wanted to share with you in case it helps at all. She has free resources that explain eczema in a very different light than western medicine. I’m still going through the course but after trying so many things .. I realized a lot of this information is different from what I’ve heard and it’s worth a shot - https://instagram.com/amythemedicinewoman?igshid=1jq3rusxq3uyi
4/16/2020 06:31:58 pm
Thank you for sharing this with me. I will definitely check her out.
2/26/2021 06:41:36 pm
I happened upon your blog while doing one of my many, many searches on tsw. My son is going through this. We are starting our 8th month steroid free. It has been a rollercoaster to put it very lightly. I actually have a question if you don’t mind. Did your skin tend to look worse by the end of the day than the beginning? Every morning is so promising for my son. He skin is still dry and flaking but looks pretty clear. But then by bedtime or early evening he has flared up in some spots, mainly on his legs and forearms. I was thinking it has something to do with cortisol levels. Thanks for taking the time to read this and hope you are doing better.
6/23/2021 07:28:56 pm
Thank you for this amazing post. I’m in my first month of TSW and it has been hellish. I have been more tired than usual and asked myself that same question: Am I really this lazy? It is good to know that it is actually deeper than that. Non-linear healing haunts me too- I think “how long will it take for my life to be how it was before”. I’ve experienced all the itsan symptoms too. Time will heal, yes, but what do we do about the emotional scars left from this vigorous withdrawal. I am ready to be on the other side of this equation- healed and living in the tomorrow I’m dreaming of now.
You're definitely not lazy. Honestly, I'm still healing the emotional scars from this entire experience, but I'm so much better than I used to be. I was in therapy for most of my withdrawal and still am. I promise, one day you're going to look up and be amazed at how far you've come. I know it doesn't feel like that now but you're heading in the right direction. I found my current therapist here: https://openpathcollective.org. Therapy can be super expensive but this is an affordable way to get what you need.
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I'm Lauren, aka Just Du Pree, and I want to thank you for reading. This is a space where I share my very personal journey healing from eczema and topical steroid withdrawal (among other things), life lessons I've learned along the way, and occasionally the thoughts of an awkward Black girl (no Issa Rae). I'm a performer and filmmaker, so if you feel so inclined, pop over here to see what goes on in my mind on the regular. If you like what you see, you can stay up to date with my work here. Much love, friends!