Woman smiling

My arms are full of needles. My chest is covered in electrodes. Cold liquid pumps through my veins. Pain fires through my legs and back. My head lolls from side to side. My head is so much lower than my feet, I’m sliding off the gurney. My phone won’t stop ringing. My husband…….

“Hellllph… hellllph… hellllph…” I slur, not coming close to the din of beeps and distant voices in the emergency ward.

10 hours later I’m wheeled into the Intensive Care Unit. A nurse sits by my side 24 hours a day. Constantly testing, caring, administering. Machines beep whenever I try to move. I try hard to keep still, to lie as straight as the comatose patients around me. Beep. Beep. Beep.

I’m scared. And not being able to see my bouncing 4-year-old or my rock of a husband makes it that much harder. As expats living in our bubble through this pandemic, suddenly being apart from them physically hurts.

Doctors come to do their rounds. There’s….7, 8, no 9 of them. Oh. So I’m that case. The rare one that all the junior doctors come to see. I tell 9 sets of peering eyes how I’m feeling.

My brave Dad was that case too. Whenever I tell a doctor my Dad passed from heart cancer, their eyes shine with curiosity. So rare illnesses run in the family then.

I’m repeatedly asked to tell my story. It repeatedly ends with me saying “I’ve barely been able to function for months. I arrived at a hospital in the morning for tests, begging to lie down. I was pushed around in a wheelchair for hours as I made my way through a long list of diagnostics. I felt so broken a GP did a home visit at lunchtime. He left and I remained on my couch. By late afternoon, I decided to stop plastering a smile on my face. Paramedics carried me down 4 flights of stairs to their waiting ambulance.”

I’m repeatedly told it was a very good thing I called an ambulance. I was having an adrenal crisis – which would have rapidly killed me, left untreated. I repeatedly wonder why no medical professional that day (or in the months before) found more answers.

I see more people in the hospital than I’ve seen in the past year. Countless doctors, nurses, porters, caterers, cleaners, patients… I’m surrounded by medical people – who keep telling me I don’t need to wear a mask. Because they do they do it for. It feels like it’s an alternate time, like the pandemic isn’t raging… Oh wait – a long cotton bud is being shoved down my throat and up my nose. We’re back.

Days pass, I still haven’t been officially diagnosed. It’s a daily swirl of blood tests, IV fluids, blood pressure, medications, scans, canulas, snatched conversations, hospital food, and hurried (wonderful) NHS staff. Finally, the diagnosis comes. Addison’s Disease. A rare condition where the adrenal glands are unable to produce enough hormones. I’m beyond grateful the hospital team has figured my puzzle out. 

I set my daily medication alarms. I’m handed my steroid emergency card. I order a medical bracelet. I get sent home with a big bag of medicines and steroid instructions. I have an appointment to learn steroid education. I’ll learn how to do emergency injections. They want my husband to learn too. I start to process that an adrenal crisis can kill you. 

I leave the hospital, swollen like a cartoon balloon character. I’m carrying so much fluid I’m waddling like I’m in my third trimester.

I’m ecstatic to be back home. My 4 year old won’t stop squeezing me or leave my side. I’m walking like a 90-year-old, and I’ve got my maternity clothes on – but I’m outside in the fresh air. My energy is creeping back. I start to deflate. I start enjoying time with people in my life again.

I now know I have a disease that med students routinely get wrong on their exams (as one doctor so thoughtfully told me). I now know that remembering my hormone replacements throughout the day is my ticket to a full life. I now know to watch for an Addisonian crisis – which can be fatal unless treated fast.

But I didn’t know that before. I just knew that needing to lie down after crawling up one flight of stairs was seriously wrong. That being so fatigued I had to sit down to even assemble a snack wasn’t right. That my appetite was gone and I was ridiculously thin. That my face suddenly looked like I’d aged 10 years and I’d been baking on the beach. That my legs hurt. That my long hair was showing up all over the house – and on everyone in it. That I got dizzy whenever I stood upright.

You know your body. You know if something isn’t right. If you’re not finding answers you know you need, keep at it. People with rare diseases see an average of 7.3 physicians and take 4.8 years to get an accurate diagnosis.

So, the best thing you can do? Advocate for your health. Get a second opinion (and a third and a fourth, sometimes!). Be the squeaky wheel. Because your health – and your life – might depend on it.