Let’s talk about Lupus with Ms Lee –
Warning – This article contains references to suicide
As Lupus awareness month is drawing to an end we wanted to share the tough journey of one Lupus sufferer. Uplifted had the privilege of meeting London based Shawnna-Lee who lives with the condition. The poet and advocate for raising awareness is still learning how to cope with her symptoms whilst supporting others. It has not been an easy journey and it took far too long to find out her diagnosis. Uplifted shares a detailed account of the years of symptoms that she has experienced, what she has learned and the Ms Lee of today.
What is Lupus?
Lupus is an auto-immune condition which is most prevalent in women and causes inflammation, damage to the joints, muscles, kidneys and other organs.
Symptoms are not limited to but can include:
- Joint/Muscle aches and pains
- Extreme fatigue
- Butterfly rashes on the cheeks
- Ulcers in the mouth and nose
- Brain fog and memory loss
- Kidney Issues
- Hair loss
- Rashes caused from sunlight/UV Light
- Mental health problems
The 36 -year-old recalls symptoms that at the time she had no idea were all linked and part of a bigger problem. At just 15, she suffered with severe migraines. She also experienced confusion and memory loss. This led to a diagnosis of depression. All of her symptoms were treated with meds on a symptom- by-symptom basis – they were not recognised collectively by her GP.
By the time Shawnna-Lee reached her early twenties, her previous symptoms were ongoing and she noticed more changes with her body. A standout moment came in 2013 when she had a horrendous stabbing pain in her lower back which came through to her chest. She was alone and afraid. The hospital put it down to being muscle inflammation and she was left clueless as to why her body had reacted in this way.
An additional symptom was a flaky scalp. She explained that she felt as though this symptom appeared “overnight”. Scab type sores formed and she was incredibly uncomfortable. An initial suspicion was that it was an allergic reaction to hair dye – however it didn’t go away. A concerned Shawnna-Lee saw her GP and was referred to a dermatologist. The diagnosis was that she had seborrheic dermatitis. Steroid shampoos and oils were prescribed but they just made her hair feel brittle and lifeless. The problem persisted until eventually, chunks of hair started to fall out into her hands. This was a terrifying experience.
“I just didn’t know what to think, I knew this wasn’t normal. Eventually I brought samples of my hair and my flaked scalp to a new consultant.”
Shawnna- Lee just knew that she didn’t have dermatitis or eczema, she knew that her body was experiencing something else. Speaking up and being heard was the only thing she could do – it took courage to speak out to her care- givers.
“I need you to find out what is really going on with me. This isn’t right. I know it isn’t dermatitis.”
She was right. Her GP agreed to do a full set of blood tests, including an ANA test. (anti-nuclear antibody) blood test. A call from her GP confirmed that the results of the test were indicating that she had Lupus. She was referred to Rheumatology but it took six long months to be seen by a Consultant. Shawnna-Lee was 28 when she received her formal diagnosis of Lupus. An MRI & CT scan followed for her persistent, excruciating back pain – the scans showed a mass in her thorax. Her Rheumatology consultant confirmed that everything she was experiencing was part of her Lupus diagnosis.
Unfortunately, her back pain has persisted to this day and at the time of our interview she had been diagnosed with inflammatory arthritis – which is directly linked with her Lupus condition. This symptom has been the most persistent problem for Shawnna-Lee, which means she has had to rely on prescribed medicines: Naproxen and Co-Codamol. Aching ankles is another ongoing symptom – particularly her right ankle which swells regularly and she has started developing osteoarthritis in both of her knees!
“On the days when I am an 8 and above on the pain Richter scale – I take Naproxen. I’m worried about the side effects of this on my stomach with long term use, so I only take it when I absolutely need to.”
Ginger tea with Ms Lee – Alternative Therapies
Hydroxychloroquine is the medicine that is prescribed for Lupus patients as well as other similar auto-immune conditions. Shawnna-Lee started to think about alternative therapies as she was still feeling generally unwell despite the medication, and she has found that Ginger tea with some thyme has worked very well for her.
“Boil fresh ginger with fresh thyme and drink it daily. It has really worked for me with helping to reduce inflammation in my joints and my regular migraines. I was regularly catching chest infections and viral infections and it has really helped. Also, the first time I caught Covid, I developed a bad cough and for me, it helped to stop the cough in its tracks. I just buy it in any supermarket. It doesn’t taste the best but it’s working for me.”
Lupus Group and Lock Down
It’s always admirable when a woman like Shawnna-Lee turns unfortunate circumstances into something good. Understandably, she was part of the vulnerable group during lockdown. She connected with a fellow Lupus sufferer and the pair decided to start a WhatsApp group for Lupus warriors. They combined their followers on Instagram and now they have over 75 women who are in their group from across the globe! Incredible.
“We really do rely on the group to pick us back up. We have had women who have suffered miscarriages through having Lupus. This group has given women the support and I am so glad that we have it up and running.”
It was extremely important to Shawnna- Lee to talk about the severity of the impact that her Lupus diagnosis had on her mental health. The lack of information and duration between diagnosis and a follow up appointment caused chaos in her mind. She over indulged in alcohol and partied and this only exasperated her symptoms. She felt lost and alone with no answers. The strain manifested and sadly, she tried to take her own life.
“I was just given a diagnosis and sent on my way. I just didn’t know how to cope. This led to me having a mental health breakdown and I attempted to take my life three times in one week. I lost hope and I was tired.”
This determined lady has managed to find her way through her dark thoughts. Incredibly her spirit hasn’t been broken. When she was at her lowest point, she engaged with the services that were available, and returned to writing poetry. Now, if she starts to feel overwhelmed, she practices techniques and mantras that she has taken the time to learn.
The Ms. Lee of today is a determined ambassador in spreading awareness of Lupus via her social media platforms and at public speaking events. She is approachable to others who regularly reach out to her for help and support. Uplifted is about building communities and Ms. Lee is smashing it! She is sharing her own experiences to encourage other women to break the staggering statistic of Lupus diagnosis’ taking so many years. Speak up to your GP or deal with Ms Lee! 😊
“Lupus usually takes around 5-10 years to be diagnosed, however it was longer for me. When you go to the GP – Ask for a full blood count, that checks everything. An FCV blood test. If you are not having that type of blood test- it won’t show up in the results.”
We wish this gorgeous soul the very best in all of her endeavours; this is a talented lady and we can’t wait to see what’s next. Check her out on Instagram @mslee.official.
If you think you have symptoms of Lupus or are you a Lupus sufferer? -why not visit the Lupus UK website for further support. www.lupus.org.uk