Understanding Lupus: A Real Story About Symptoms, Delays, and Diagnosis

About 10 years ago, I met Jess, (Founder of AIDA). We got on straight away with the same sense of humour, a shared love of Harry Potter, and an ability to talk for hours about everything and nothing. Over time, we became close friends. The kind of friendship that just fit easily into everyday life.

I’m a doctor and currently work as an orthopaedic surgical registrar. Like most people in medicine, I’ve spent time across different specialties during my training. I rotated through general practice, acute medical admissions, urology, general surgery, and then finally into orthopaedics where I’ve stayed. I also run a small side business in medical-grade skincare and aesthetics. So I suppose you could say I have a fairly good understanding of the body, particularly when it comes to joints, bones, soft tissue, and skin. Unsurprisingly, I’ve become the unofficial GP for many of my friends and family.

Jess, however, rarely asked for medical advice. She’s always been fit, energetic, and hardly ever ill. She was the kind of person who worked out regularly, ate well, and looked after herself. So when she started mentioning a few small things, I didn’t immediately think much of it.

It began with a sore throat, not long after she’d had surgery. That kind of thing is common and often settles on its own. Then she started having some stomach discomfort, which again can be caused by all sorts of harmless things. Around the same time, she mentioned feeling more tired than usual. Still, nothing stood out. Life is busy, and everyone gets run down now and then. There wasn’t anything obvious to suggest something serious.

But looking back, that’s when things started to shift, slowly and quietly.

In this blog post, I’m sharing my personal account of Jess’s journey to diagnosis, as I remember it and with her permission. I’m not writing this as her doctor, but as her friend. And while it’s just one story, I think it speaks to something much bigger.

At first, the symptoms seemed disconnected. A sore throat, a bit of stomach pain, some fatigue. Jess mentioned them casually, often downplaying how she felt. She isn’t someone who complains. If anything, she pushes through things and just gets on with it. So when she started bringing things up more often, I started to pay closer attention.

She’d say things like, “I just feel wiped out all the time,” or, “My stomach’s been a bit off again.” All things that could have simple explanations. Post-viral fatigue, stress, irritable bowel, all common and usually nothing to worry about, especially in someone otherwise young, fit, and healthy. At that stage, I gave the kind of reassurance I’d give to any friend or patient in a similar situation. Logical, sensible, calm. We didn’t jump to conclusions because, frankly, there didn’t seem to be anything to conclude.

But the symptoms didn’t go away. If anything, they started multiplying.

One day, Jess told me she’d been waking up with stiff, aching fingers. “Jo, my hands feel like they belong to someone twice my age,” she said, half-laughing, half-serious. That was the first moment something really stood out to me. Morning joint stiffness, especially in the small joints of the hands, is one of those signs you mentally file under “worth investigating.”

I suggested she go to her GP and ask for some routine blood tests, just to see if anything might be brewing under the surface. She did, and the results came back mostly normal  apart from low platelets. That result caught my attention. Low platelets aren’t super common in someone like Jess and can occasionally point toward something autoimmune. It was a small clue, but still not enough to draw a clear line from symptoms to diagnosis.

Then things started escalating more quickly. She developed a persistent cough and told me she’d been coughing up blood. Not a lot, but enough to worry her. Around the same time, she sent me a photo of a rash. The second I saw it, I felt that familiar shift. A gut feeling, based on experience and instinct, that something wasn’t right.

The rash looked like the kind you see in autoimmune conditions. I’d seen it before in textbooks and in patients during my training. It wasn’t just a skin irritation, it had a pattern. It had meaning.

That was the moment it all began to come together in my mind. Fatigue. Joint pain. Low platelets. A rash. Coughing up blood. All these seemingly separate things were starting to connect. And in that moment, quietly in the back of my mind, one word surfaced: lupus.

Of course, I didn’t say that outright. Jess affectionately calls me “Dr Jo,” and I wanted to be careful not to alarm her unnecessarily. Instead, I gently suggested she go back to her GP and ask for more specific tests, including ones for autoimmune markers.

She did. And that’s where the journey toward a diagnosis really began.

What Is Lupus, Really?

Lupus (officially systemic lupus erythematosus or SLE) is an autoimmune disease. What that means is: her immune system, the thing meant to protect, starts attacking her own tissues. It can affect skin, joints, kidneys, even lungs or heart.  

Symptoms vary wildly, because the immune system can target many different organs. Some common ones:

• ⁠  ⁠Joint pain, stiffness, swelling (especially first thing in the morning)  
• ⁠  ⁠Rashes, especially the so called “butterfly rash” across the cheeks & nose, or rashes that worsen with sun exposure  
• ⁠  ⁠Extreme tiredness (fatigue) that doesn’t get better with rest  
• ⁠  ⁠Low blood counts (like low platelets), possibly affecting red and white cells too  
• ⁠  ⁠Chest pains, coughs, sometimes bleeding (if lungs are involved), hair loss, headaches, kidney involvement, etc.  

Who Gets Lupus and What Are Red Flags?

• ⁠  ⁠Demographics: More common in women (especially in childbearing years). Lupus can appear in people of any age.  
• ⁠  ⁠Triggers: Genetic predisposition, environmental triggers (sunlight, infections, stress), maybe hormonal influences.
• Red flags for early detection:

o Unexplained symptoms appearing in multiple organs (e.g. rash + joint pain + abnormal bloods + chest symptoms)

o Unusual test results like low platelets or white blood cell counts without an obvious cause

o Symptoms that don’t resolve with rest, or that worsen gradually over months

o Persistent rashes, mouth ulcers, photosensitivity, unexplained fevers

Jess’s case had several of these: joint stiffness, low platelets, rash, cough with blood, gastrointestinal disturbance. They added up.

Reality Check: Delays, Misdiagnosis, and Why It’s Hard

One of the things I found in reading up after Jess’s diagnosis is how common delays are. It’s not just us being anxious friends, there’s solid research showing that people with lupus often wait a long time to get diagnosis and treatment.  

Some facts:

• ⁠  ⁠A UK based study showed an average 7.5 years delay in diagnosis among 268 patients.  
• ⁠  ⁠In the same study, some participants waited up to 35 40 years before the correct diagnosis.  
• ⁠  ⁠Over 60% of UK lupus nephritis (kidney involvement) cases are diagnosed in late (more severe) stages.  
• ⁠  ⁠From the Rare Autoimmune Rheumatic Disease Alliance: nearly one third of patients with rare rheumatic autoimmune diseases (including lupus) wait over five years for diagnosis.  

Causes of delay include symptoms being vague, overlapping with common things (IBS, stress, mild infections), doctors attributing discomfort to less serious or more common conditions, lack of awareness, healthcare access. Also sometimes patients themselves wait. I think Jess would agree that having a doctor as a friend gave her the confidence to ask for further tests when otherwise she might not have. 

How Doctors Diagnose Lupus: Tests & Process

Because there’s no single test that says “Yes, this is lupus,” the process is combinational.

1.⁠ ⁠History & clinical exam: Listening carefully to what symptoms occur, when, how they evolve. Looking for signs like rashes, joint swelling, physical evidence.

2.⁠ ⁠Blood tests:

• Complete blood count (CBC): red cells, white cells, platelets. Abnormalities (like low platelets) are common. 
• Antinuclear antibody (ANA): very sensitive (most people with lupus are ANA positive), but not specific (positive ANA doesn’t always mean lupus).
• More specific autoantibodies: anti double stranded DNA (anti dsDNA), anti Sm (Smith), and others. These help once ANA is positive.
• Tests for inflammation (ESR, CRP), kidney & liver function, complement levels etc.

3.⁠ ⁠Urine tests: Checking for protein, blood in urine, which can signal kidney involvement.  

4.⁠ ⁠Other investigations: Sometimes imaging (e.g. chest X ray if lungs involved), or biopsy (skin or kidney) to understand damage and guide treatment.  

What Happened with Jess and What We Can Learn

At first, Jess’s early symptoms, a sore throat and some stomach upset, seemed harmless. I reassured her, because it’s easy for both doctors and patients to explain things away, especially when the signs are subtle. But as her symptoms grew in number and intensity, the pieces started to add up: joint stiffness, low platelets, a rash, and coughing up blood. These weren’t isolated issues, they were connected.

Jess played a big role in her diagnosis by advocating for herself. She kept going back, asking questions, and pushing for further tests. Eventually, the blood work and specialist referrals confirmed lupus, and treatment could begin.

Jess’s story is a reminder that even people who are healthy, fit, and careful with their lifestyle can develop chronic illnesses. Good habits help, but they don’t make anyone immune. It also highlights a challenge in healthcare: the system isn’t always set up for diseases that develop slowly, affect multiple systems, and have symptoms that come and go. Getting the right tests, at the right time, from the right specialist can be difficult.

Final Thoughts: What to Look Out For and What Helps

If you or someone you care about has persistent symptoms that don’t quite fit together, here are some things to keep in mind:

• Watch out for red flags like joint pain and stiffness (especially in the morning), unexplained rashes (especially on the face or areas sensitive to sunlight), unusual blood results (like low platelets or white cell changes), unexplained fevers, fatigue that won’t improve, or symptoms affecting multiple body systems (skin, joints, kidneys, lungs, etc.).
• Don’t ignore mild symptoms. Early signs can be subtle. Keeping a symptom diary and asking for investigations can make a difference.
• Be your own advocate. If standard treatments aren’t helping or symptoms are getting worse or spreading, don’t hesitate to ask your GP about possible autoimmune causes.
• Awareness is key. The sooner lupus or other autoimmune conditions are diagnosed and treated, the better the chance of reducing damage and improving quality of life.

Jess’s diagnosis changed a lot for her- her understanding of her health, her treatment plan, and her future. But more than that, it opened my eyes to how invisible illness can be, how vulnerable even the strongest people really are, and how important it is for all of us to listen, question, and care- not just as doctors or patients, but as friends.