My Diagnosis Story | Living With Lupus (SLE)

If you know me personally or follow me on Instagram, you know I've shared that I was diagnosed with Lupus (SLE) and have been struggling to manage my illness for years. 

I was recently admitted into hospital after catching pneumonia and then discovering I had a blood clot on my lung. On being discharged, I slowly worked on being motivated to get back into everyday life but it was hard and still is. I thought 'There must be loads of people going through this, I should share my story because it could help someone or inspire them.'

Which is why I want to share my Lupus story with my readers.

What is Lupus?

In short, it is an systemic autoimmune disease that occurs when the body's immune system attacks your own tissue and organs. It can affect different parts of your body including your joints, skin, kidneys, blood cells, brain, heart and lungs.

The main symptoms are fatigue, joint pain, stiffness and swelling, rashes, headaches, chest pain and hair loss. These are the main symptoms although there are many more!

There is currently no cure for Lupus, there are a lot of medications that can keep you from flaring and they say you are able to live your life normally, if the illness is managed correctly.

The beginning

Back in 2011, I was a Year 11 student just finishing up my work placement at the start of September. On completing my 2 week placement as a retail assistant in Bon Marche, I caught a viral throat infection which I fought off with lemon, ginger and honey tea, the doctor said I should be fine without antibiotics.

Weeks later, I was continuously waking up with a swollen face, lips and stomach, this went on for about 2-3 months before I saw a doctor.

I was sent to A&E as a matter of urgency and was told I have a condition called Nephrotic Syndrome. My heart sank, I hate being in medical environments as I'm sure many people do however, my phobia of needles means I'll do anything (anything I tell ya!) to avoid going to the doctors let alone the hospital. All I could think was 'I'm going to die, I'm only 15, why me?'

I was admitted and in hospital for a week, on a drip, numerous medications and constant monitoring. 

I lost so much weight and was off school for 3 weeks because I couldn't be around people for fear of catching infections.

I was put on a series of medication including steroids and that's how it was for next few years. I had endless hospital appointments, put on many medications that didn't work or made me worse. I was convinced, I would just slip away one day.

Fast forward.

Diagnosis

October 2015

I remember getting my hair done in Summer of 2015, it was a jumbo cornrow style, I loved it. My head was very tender the next day and itched non stop (I concluded I was allergic to the hair extensions). I decided to take the hairstyle out after a week and discovered a bald patch the size of 2 pence coin, my heart nearly burst. I was so upset and angry, thinking that the hairstyle caused the hair loss. However, throughout the Summer, the bald patch grew until it was the size of my hand and it was obvious I was having a flare up. I had just started my 2nd year of uni and I was already tired, joints were stiff, swollen and painful, my skin (mainly arms and nape/upper back) was flaring up in red, itchy blotches and overall, I felt like crap. I saw my consultant (suggested by GP after complaining about my symptoms) and he said my blood test showed it was Lupus months ago but they were waiting on physical symptoms to show before confirm it was in fact Lupus.
What?
I was so annoyed that I'd been left in the dark but also relieved that I could finally get the correct treatment.
It's been a rollercoaster since being diagnosed, the consultants and I struggled to manage my illness because my body would not respond to any of the medications prescribed (except steroids).


Present

I am currently on a low dosage of steroids, doctors are not sure what medication to have me on long term. I am also on blood thinners to break down the clot in my lung and to prevent me clotting again in the future.
I'm working on being mentally and physically healthy, I know my diet, how I exercise and my everyday activities has a major impact on when and why I flare up so I have to manage each day accordingly.

So that is my Lupus story. It's been extremely hard living with a chronic illness, especially one that isn't managed well but I'm pushing through and not letting it get me down. I will share how manage my symptoms on a daily basis and what steps I take to prevent a flare up.

I may have Lupus but Lupus most certainly does not have me.

Take care, Jess x