In the Trenches of Healing

Getting real about Auto-Immune Diseases

13 min read/3 parts

Part 1 -

Why me? I don’t know. I was diagnosed out of the blue at age 15 with this rare auto-immune disease called scleroderma. I cannot be bothered to sugar-coat this part – it is medically ‘incurable’, under researched, underfunded, difficult to treat, and is hell to live with. It’s been 22 years of navigating the formidable maze, chasing the golden question: what caused this and how do I make it go away, for good?

Since I was young, to my parents’ bemusement, I have fired off a million and one abstract questions. I have always questioned the inexplicable, fascinated by human nature, our purpose, the mind, and its potential. Scratching the surface has never been enough for me, I have always yearned for deeper understandings of everything in life, and scleroderma has been no exception. I was certainly not the person who would just swallow pills and sink into patient-victim-mode. As someone who lives life to the fullest, this disease sure picked the wrong person to live in. Since diagnosis, I have had this deep instinctive voice within me that I will overcome this no matter what. But this voice has been challenged so fiercely, that at times I felt angry at it for lying to me and giving me false hope. Giving up has been so tempting and even, logical. But I didn’t.

The most recent years have been my toughest, deepest, rock bottom moments. I am only now making my way to the other side, one step at a time. And I am ready to talk about it. I made a deal with myself that if I wrote this blog, I had to be 100% real (yikes!). I am not looking for pats on the back, but it does feel good to be heard and understood. As for so long, I have been living in two worlds – one that the world sees, and one behind my bedroom door. An exhausting way to live. Maybe others are also battling – navigating chronic illness is after all, a very lonely business. Perhaps we can start a much-needed conversation around the realities of auto-immune diseases. Let’s see…

Twenty-two years is a long time, and I haven’t always approached this illness with the same strategy. Teen years, varsity years, early 20’s… I used the well-known and effective strategy of good old denial. I could dance around the disease, ignoring most of it (the scary parts), and acknowledging other bits that weren’t too bad. I was emotionally and mentally disconnected from the messages my body was sending me. But to be honest, this strategy worked… after all it was carefree time of life and scleroderma was a huge burden to bear. Luckily the early years of the disease symptoms were more manageable. During varsity years, if I forgot my morning drugs, no problem, I chugged them down that evening with box wine (not recommended!). Out of sight, out of mind, right? Not really…

Fast forward to my first real job. The disease ramped up. The symptoms started rearing their big ugly head, and it became impossible to hide how the disease was affecting me. My inflammation and pain was flaring on and off, and huge hard rocks of calcium deposits started breaking out of my skin from the bone. I was also having regular debilitating migraines, and panic attacks. Typing and sitting became painful, daily. My parents were concerned, I was concerned, and after a ‘family meeting’ it was decided I would take a 3-month medical sabbatical. Finally, it was time to own this disease and stop running from it.

Three months came and went in a heartbeat, and I had only just started skimming the surface and realizing the beast I was dealing with. It was a scary decision, but I resigned and officially became unemployed. Not only that but I was approved for medical disability pay-out through my company benefits (a blessing within a curse). I was 26 years old and on chronic disability pay. Gulp. People at work barely knew I had health problems – I had hidden it so well. I tried desperately to adjust to my new identity. ‘What do you do?’, people would ask. What I wanted to say was ‘I am full time healing a rare disease, and I feel confused and overwhelmed’, but instead I said something else generic and socially acceptable.

The phase that unfolded post resignation was what I would call my ‘experimental years’. I am by nature a do-er, and so I intensely focused on ‘trying to fix myself’. I chaotically threw every single modality of healing and treatment (western to alternative) at my problem. If an alien from Mars arrived with a new species of turmeric, I would have taken it, no questions asked. Too much, too quickly? I ended up with the worst flare up ever, one that lasted years. I was bed bound for most of 2015, with shocking blood markers, extreme pain and unable to walk on some days, or bend my knees and arms. I had thought it would be a good idea to take myself off my meds and go au natural, but I did this with no life jacket, and it didn’t end well. Looking back at this time, I was on a manic ‘fix myself’ journey. Honestly, ask me about any product, any healing modality, any anything…. I will tell you now, I tried it.

This period was hard - my symptoms progressed rapidly, and I am still doing damage control to this day. The disease causes muscle depletion (in my case my upper body); weakens the circulatory system (I dress like an Eskimo for a trip to Woolies); tightens and scars the skin and connective tissues (feels like you are wearing a wet-suit that’s too small); can cause lung disease (by some miracle I have dodged this!); and my personal worst… calcium deposits. At first the deposits were manageable - uncomfortable, but okay. But eventually I became riddled. The deposits look and feel like bone and cut like glass. Large rocks, some the size of peach pips, wedged their way into every single joint, attaching to bone and then breaking out through my skin. They have grown out the tips of my fingers – a place where nerves scream in pain. And under my feet where I am reminded with every step of their presence. They’re also in my elbow joints, on my kneecaps, on my shoulders, and down my spine. I cannot begin to describe the painful infections, gazillions of surgeries, and the agony, and anguish that they have caused. I have had to become comfortable with the sight of flesh and blood on a daily basis. As well as mastering the art of wound management 101.

Naturally with not being well enough to work, I was sinking into ‘over-thinking’ mode, which us humans can be so good at. I needed purpose. And so, I dove headfirst into an untapped fascination of mine: the world of neuroscience, psychology, and gut health. I juggled flare up’s and studying, and in time become a Life Coach, got a Psychology degree part-time, and completed a nutrition qualification. The more I read, the more I found a different type of science, the science we aren’t taught at school. Some important realizations became glaringly clear to me, and I thought ‘why does no one know this stuff?’. I learnt all about how the mind and body are one system. Emotional experiences can switch genes on and off. Visualization can change our biochemistry. Our gut bacteria influence our mood and immune function. Inflammation is linked to depression (and vice versa). Food can either feed or fight disease every day. Stress suppresses immune function. Our neural pathways can be rewired. And 95% of diseases are lifestyle related (not genetic!). Woah.

In 2018 I began implementing this newfound information and using my body as the guinea-pig. My world flipped upside down and I overhauled my lifestyle in every way. I started a small business and began to teach what I was learning. This gave me purpose and renewed energy, and I was pumping with dopamine and serotonin and all those lovely neurotransmitters. My health improved; it improved a huge amount. I thought I had cracked the code and my health woes were behind me. But it was relatively short lived. And what I couldn’t see was that over the horizon my toughest and hardest years were about to come rolling in.

Part 2 -

I have now learnt that there are two types of healing: glamorous healing and real healing. I had been dancing around in the glamorous healing up until then, the one where you can distract yourself with everything external… the perfect smoothie, the best probiotic, the fanciest supplements, the purest diet imaginable, you name it. A belief that only something outside of you can fix you. Don’t get me wrong, the nutrition and gut health protocol matters. in fact, it’s fundamentally essential. But for me it wasn’t enough. Glamorous healing wasn’t getting me across the finish line. And so, I fell off the healing hamster wheel, hard, and my health took a turn for the worse. It was time to pick myself up and reassess. Again. I was devastated.

You see, glamorous healing is a state of doing. Do the gluten free diet. Do the fasting. Do the genetic testing. Do organic. Do ozone therapy. Do the gut cleanse. Do better. Do more. Do it now. Doing is better than apathy (i.e., not doing) though. And doing takes enormous discipline, time and money. Real healing, however, is a state of being. It’s about acknowledging the internal work that needs to be done. It’s about taking inventory of emotions, belief systems, and unconscious thoughts and habits that are keeping you stuck. And its about being comfortable in stillness.

And so that is where I have been the last 3 years: in the trenches. Properly. Tackling and unpacking the hard stuff: my mind, beliefs, and emotional entanglement with scleroderma. Real healing is healing from the inside out. And it started with acceptance, something I had read a lot about, but was not friends with. And something I had desperately avoided. I was scared to accept scleroderma - I thought that acceptance meant admitting defeat. I now know, acceptance is not the end but the beginning. Acceptance has liberated me; and freed up much needed energy to focus on healing. With that said, acceptance is fluid and it’s okay to fluctuate around it on a bad day.

Covid lockdowns luckily came at a time when I needed to creep inwards, dig deep, take inventory, and heal from the inside out. My journey of real healing was sparked by me reading three separate, incredible books, that changed my life forever (a discussion for a rainy day). It became clear to me that some essential elements had been missing from my journey thus far. I light went off, the penny dropped, and I knew it was time to recalibrate and adjust my roadmap. I asked myself, what will healing this disease take? The answer: Everything. Absolutely everything. I was all in.

Life in the trenches the last 3 years, has been hard. it’s been uncomfortable. It’s been raw. And it’s been scary. The disease has flared up over this period, badly. I hit my lowest lows and had my longest nights. Healing is anything but a linear graph, it’s 5 steps forward and 4 steps back, and repeat. There was nowhere to hide. No more green juices or herbal tea could fix it anymore. On a bad day, my fingers became too painful to use – I couldn’t pull up socks, switch on a light, or brush my hair. I have been there in that 10 out of 10 pain, and I will forever have compassion for anyone who’s been there too. I have also lived in suffocating levels of chronic fatigue. It doesn’t matter how perfect your life is on paper, if you exist in pain and exhaustion, your quality of life is a solid fat zero. It’s very hard to try and heal from a place of survival mode, and it’s during that time of desperateness that you dig deeper than humanly possible, and the line between hope and hopeless is so thin. I fluctuated across that line constantly.

If pictures could speak a thousand words, what a story my wedding photos would tell. After chasing covid dates numerously, our wedding day landed during a time that was not my optimal choice. A time I was my most emotionally, mentally and physically bruised from the disease. A time I wanted to curl up and hide from the world. I remember discussions around if I could manage walking down the aisle, as I was in so much pain. But none of that mattered in the end. I showed up, spotted Alex’s loving eyes at the end of the aisle, and felt immense gratitude for this perfect moment. And thank god for pain killers, I danced my heart out all night, with the people I love (wearing the most granniest shoes imaginable!).

To stop the disease progression and give my body a chance to heal for good, I’ve had to change my entire way of being. I have had to change the very way my brain is wired. The way I think. The way I react. My defense mechanisms. My communication with myself. My self-compassion. My approach to vulnerability. My unhealthy perfectionism. My people pleasing habits. How to set boundaries - this is work in progress (saying no, without needing to over explain). And the biggest one of all - my ability to ask for help. I have also had to make peace with knowing that being misunderstood is part and parcel of this journey.

Putting myself first has been an essential step in unlocking my healing. I have had to reimagine and visualize a ‘new me’ – a healthy, thriving Sarah (que the exciting world of neuroplasticity!). You see, there is a downside to unwavering positivity and keeping up a ‘brave face’. I realized I had been shielding my bad days from the people who loved me most, as well as the world, and this made me more unwell and anxious. For that reason, acceptance has been a process for not just me, but my entire family.

After swinging between different healing-type-diets for ten plus years, I became tired and frustrated. I have since reviewed my relationship with food and it’s been liberating. For now, I am 70-80% plant based/vegan – or at least until my body tells me otherwise (I do not attach to diet labels). I don’t feel deprived or sorry for myself with eating this way. In fact, the opposite – I have never enjoyed food more! Our brains hate change, and adopting strict diets can cause stress and guilt cycles, all of which undermine the objective of healing. I since have re-wired my brain around those complexities (phew!). I have also found my sense of humour again and embraced my silly side (I’m a weirdo at heart!).

I live with gratitude mostly – except on bad days, then I just let myself feel it in all its entirety, because that is healthy too (It’s taken me a lifetime to learn this one!). I now know that hiding my suffering inside my bedroom isn’t realistic and it’s okay to ‘not be okay’. And it’s also okay to cancel, or not go on that trip. Travel and flare up’s go hand in hand, and I have had many miserable trips. Auto-immune symptoms change on a dime – you’re okay at that 10am girls’ brunch, and then man down in agony that afternoon (If you know, you know). The uncertainty of predicting the next flare can drive you insane and make planning your life a lottery. I now try to mindfully put my energy and time where I want it, and with whom. And I am learning to plan from love, not fear.

Within acceptance, it’s okay to miss things the way they were. I have lost 90% function of my right hand and I miss it every day with every task. I struggle daily to open jars, carry grocery bags, do up buttons, and even type this blog right now. I miss showering bare foot and walking pain free. I miss the way I used to look – scleroderma changes facial features (an unfair aspect that has taken me decades to grapple with). I miss having optimal strength and flexibility. It’s far easier to slap on a plaster and treat the symptom, than question the cause. Slapping on the plaster is good, I advise it, but then also go deeper into the ‘why’. I have found my ‘why’s’ and put together the puzzle pieces of my own health story. Will you?

Part 3 -

What a journey it’s been. I will never forget sitting in my school uniform, opposite my quietly spoken rheumatologist. I was so young; he was so old. He said, ‘Sarah, find someone who will make you happy, and do something that you love’. He knew my path ahead would be hard, and this advice would be needed. And how true his words were. Alex has met me at every high and low, never trying to change me, just loving me as I am, in his exceptional ‘Alex way’. We have packed in a lot of life, love, and tears in our almost 5 years together. I could never have dug into the depths of healing without him. Despite everything, we never stop having fun together. And we're quite good at laughing at ourselves!

My parents have been right in the trenches with us, walking this journey in real time. Lovingly supporting us in every way. Thank you, Mom and Dad. Unwavering, solid relationships is all I have ever known – I am so lucky. My two incredible sisters, special besties and friends, close-knit cousins, aunties, and uncles – I am so grateful for you all. And the amazing doctors and my indispensable GP who has held my hand every step of the way for the last decade.

Healing is like scuba diving on the ocean floor with no headlight. You don’t know up from down, or left from right, and you hold on to every drop of oxygen. But then over time, slowly with patience and determination, you start to find your rhythm and see things get a little better and better. You can pop your head up above the water and just spot the horizon, and you know you’ll be okay.

Healing looks different for everyone; this is just my experience of it. I am not out of the woods yet, and there are still many hard days. But I can finally say that I am on the right track and my mind, body, and soul (as cliche as this sounds) are all in the same team. The nervous system needs to feel safe in order to leave survival mode and prioritize healing. Feeling safe for me meant showing up exactly as I am on both good and bad days and loving myself not despite this disease but in spite of it (big difference!). The flares are less frequent, and the good days are on the upswing. I have a spring in my step, and a twinkle in my eye – and the fog is lifting. This illness has taught me so much - mainly compassion, courage and acceptance.

I am writing this blog amongst the quiet but bustling mountains of the Winelands, South Africa. I sobbed through every sentence – tears of sadness, tears of joy, and tears of relief. I wrote from my heart. While we have been in the trenches of healing, we have too been in the exciting trenches of building. We have recently moved into our new new home and sanctuary. I threw myself into designing my dream kitchen – a place for endless wholesome cooking and joy (watch this space!). We are nestled in a farming community - we have a dam with ducks, organic veg farmers right next door, and an unlimited supply of fresh mountain air. I have learnt to love the basics. And I never forget the good, and there is always good. Leaving our big city life behind, has played a huge role in my wellness journey.

To anyone diving alone in the murky waters of disease. I get you. I see you. It sucks, so bad. I am so sorry. You did not cause this illness. You have been dealt a hard card. But I 100% believe that there is a solution to everything. Don’t give up. Separation is an illusion; support is there if you allow it. It is your birth right to be well, healthy, and happy - I can’t tell you enough how much we forget that. I have been to hell and back with my health and know what it’s like to have nothing certain to hold onto. And so, I appreciate the good times and ride those waves with all my heart. I hope you will too.

What does the future hold? Well, I have beaten the prognosis so far. And I will continue to beat it - I have a zest for life that I will never shake off. My inner voice is shouting so loud now, and I believe it, I will overcome this, no matter what.

P.s What about now?

I am studying (on and off), my MScs in Neuroscience and Mental Health, through King’s College London. I love science but have recognized that it’s not everything – my greatest teacher is my own body: I listen and read it every single day. My promise is to keep content honest. There are so many experts out there, but are there enough patients speaking their truth? My aim is to dive deeper into the topics around healing, wellness, mental health, neuroscience, and nutrition, through my rebranded platform the happi brain. I hope we can all connect and navigate wellness, together. It all starts with having real conversations.

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