If you’re here, chances are you’re knee-deep in weird symptoms and vague answers.
It’s like playing a never-ending game of “find the reason for the symptom?”
You’re not alone.
🛣️ Today, I want to take you on a little trip down memory lane…
Not the fun kind with photo albums and cake, but the confusing, exhausting, and often-dismissed journey I went through before ever getting a diagnosis. There is another post, ‘the one where the mystery begins’ pre 2008. That brings you up to speed with the freight train that hit me before the next 14 years of often, silent suffering.
Spoiler: the road was long. Buckle up.
📅 2008–2021: Fatigue, Aches, and Fog
Just a quick note here — I’d been experiencing fatigue since 2008, often following busy weeks or periods of stress.
I’d pop some ibuprofen, and push on through ( POT). Having an 8 year old, looking after a home and working hard to get noticed at work is no mean feat even without the health concerns lurking at every corner of my mind.
I was worried, what was wrong with me, was I going to have another 2007 episode.
During this long chapter of my life, I continued to climb the career ladder, often pushing myself to stay in work even when I was unwell, sometimes battling infections. I didn’t complain. I kept it quiet, staying under the radar and just getting on with it.
Infections became a regular part of life, as did long periods of exhaustion. I remember taking my daughter to Hampton Court Palace and feeling overwhelming gratitude when lunchtime arrived, simply because it meant I could lie down on the grass while she ate.
I’d pop to Mum’s so I could stretch out on the sofa while she looked after my daughter, or feel unreasonably upset if anything disrupted my bedtime routine. But it wasn’t really about routine at all — it was about survival. I was carefully protecting every scrap of energy I had left.
Let’s fast-forward to 2017 — the year everything really started to shift.
⚠️ 2017: Stress and Anxiety Take Hold as Chaos Unfolds…
Some of you might remember the March 2017 terrorist attack on Westminster Bridge. Unfortunately, I was caught up in that — though, thankfully, not physically injured.
I was in Parliament Square as it happened. In the moments before the police arrived, time seemed to slow down. It was eerily quiet as people tried to make sense of what was unfolding. I was in my car, driving toward the bridge — directly opposite the car that plowed into the students. At first, I thought it was an accident. But as I edged forward and saw people lying in the road, the reality hit: it was an attack.
Then I heard gunshots behind me and thought we were under fire from multiple terrorists. I hadn’t seen any visible police presence yet, and no one knew what was going on. My brain kicked into survival mode. I ended up ducking under my steering wheel, convinced there were shooters.
🚨 There weren’t, the gun shots behind me were the police dealing with the Terrorist.
I eventually drove home in shock, hands trembling. I was so shaky I poured boiling tea over myself trying to calm down.
The very next day, I got on the tube to head back to work. Someone shoved past me, and the woman behind me spilled her coffee and let out a yelp.
💥 I completely melted down — shaking, heart racing — her yelp triggering a full-blown panic reaction.
That was it for me and the tube.
I didn’t ride it again for a year.
I felt claustrophobic and panicked, like I couldn’t breathe.
None of this, by the way, has anything to do with Sarcoidosis.
But I was very stressed.
Not long afterwards the Manchester bombing triggered an unexpected wave of anxiety. Watching the news, I felt irrationally overwhelmed, even though I wasn’t directly affected. I realise others faced much worse, but I’m being honest about how it stirred something in me.
I didn’t want anyone to know I was struggling, so I went to the GP in secret. I explained I couldn’t cope with crowded spaces or public transport. I was incredibly anxious.
Her response?
“There’s no therapy I can offer for this”
I wasn’t offered support. That GP (not the one I have now) clearly got into medicine for the paycheck, not the people. There was no bedside manner. There was no compassion. There was nothing.
🙍♀️ For me, asking for help was hard. I didn’t know where else to turn.
During this period life was stressful on and off at work and at home. Life felt hard whilst there was lot’s of good times in between I felt 💩 a lot in between.
🦴 Joint Pain, Tiredness & Feeling Older Than I Should
Around this time, I started to feel unwell. I had low-grade fevers and constant aches. My joints became increasingly painful, especially my knees.
🚗 I was driving more to avoid public transport and wondered if my manual car was contributing.
I used my company BUPA plan to see a private doctor.
An MRI of my knees followed, leading to injections in both — which did absolutely nothing.
Looking back, it was like trying to fix a fire alarm by painting over it.
My body was screaming; I just wasn’t listening yet.
Convinced my manual car was the culprit, I made a full-grown-up decision and bought an automatic.
Surely, that would fix everything.
(Spoiler: it didn’t.)
This cycle continued for the next few years. I managed it with ibuprofen. To be fair, it did help at times.
🩺 2019: Gynaecological Plot Twist
Then came a hysteroscopy for some ongoing gynaecological issues. I woke up from what was meant to be a routine investigation to find they’d done extensive adhesiolysis — essentially, my insides were stuck together like a clingfilm disaster.
Oh, and surprise! I also had adenomyosis.
At this point, I started wondering:
Could the fatigue, the joint pain, and the general body weirdness all be connected?
Since being diagnosed with Sarcoidosis, I don’t believe they’re related anymore.
But at the time, when symptoms are all over the place, it’s easy to feel lost trying to piece it all together. You become your very own Sherlock Holmes in desperate need of a Dr Watson.
💢 2019–2020: Joint Pain and Tear-Inducing Pinkies
By now, the joint pain wasn’t just annoying — it was dramatic.
I once knocked my little finger on a table and was reduced to tears.
My body felt like it was trying to file for divorce.
I saw a GP, had blood work for arthritis (I can’t remember the specifics), but it came back negative.
Nobody seemed concerned that a healthy forty-something shouldn’t be crying over a stubbed pinky.
😮💨 Early 2021: Breathless, But Not in a Romantic Way
Breathlessness had always been a background issue, but in 2021 it cranked up the volume.
I’d been told I had asthma since childhood — but let’s just say, I’m not so sure anymore.
Other people started noticing.
That was both validating and mortifying.
👟 Like the time a colleague and I were walking and talking and she said,
“God, you’re really unfit — you’re so out of breath!”
Or when I bent to pick something up at a friend’s house, and she asked,
“Why are you so out of breath when you talk?”
That was my breaking point.
The straw that broke the camel’s back.
I finally called my GP to which there were no appointments available and I would have to call back! I didn’t and a month later when it was even worse I called again, stating very clearly I was suffering from shortness of breath. An appointment was arranged.
🩺 Next post… Diagnosis.
💬 Why Share All This?
Because this is the part of chronic illness we don’t talk about enough — the before.
The years of confusion, of being dismissed, of gaslighting yourself because doctors keep shrugging and your labs come back “fine.”
The part where you’re not diagnosed — just defeated.
And yet… this was the beginning.
✨ Of answers.
🛡️ Of advocacy.
💪 Of finally learning how to fight for myself.
So if you’re in your before right now, I see you.
🧠 You’re not imagining it.
😓 You’re not lazy.
🗣️ And you absolutely deserve to be heard.
CuriousBethLivingLife 