Managing Lupus and Advice for Other Sufferers
Lupus is a severe condition that affects the immune system. It causes the body to over-produce antibodies, resulting in inflammatory reactions. It can irreversibly damage many of the important organs, including the kidneys, heart, lungs and brain.
The illness is more common in women as it is triggered by hormonal changes during puberty, childbirth or menopause. Lupus is a lifelong, chronic disease that is currently incurable. It has many associated symptoms, including fatigue, muscle pain and hair loss.
Receiving a Diagnosis
Sejal, 30, was diagnosed with lupus in 2015 and since then, she has endured dramatic life changes.
Lupus can be a difficult illness to diagnose, as many of the symptoms are similar to other conditions. This often means that receiving a diagnosis can take months, or sometimes years.
“I was officially diagnosed in 2015. My blood results showed a mixed connective tissue disease that looked like Lupus.”
Lupus Symptoms and Severity
Each person diagnosed will experience different symptoms, with varying levels of severity. Common symptoms for sufferers include fatigue and severe rashes.
“I experience extreme fatigue with aching and swelling across my entire body. Once I called in sick to work for three days because the pain in my fingers was so unbearable.
“In the past, I’ve broken out in severe rashes; heavily across my face, arms and sporadically across the rest of my body.”
“One of my biggest struggles is accepting the excessive hair loss. My long, thick hair became thin and lifeless, so I cut it shorter than a bob to try and make it look acceptable.”
As Sejal did not receive her lupus diagnosis early, it caused her to lose her vision in one eye.
“When my lupus is most active, its ‘go to’ organ to attack are my eyes. I now have permanent vision loss in my right eye.
“I have also experienced inflammation in my brain, as the eyes and brain are connected.
“My recent tests show little inflammation and lupus activity in my body. It’s taken a long time to get this point, and it has come with many challenges.”
Daily Life with Lupus
“I have to take a lot of medication, which I find frustrating sometimes. I take five different types of medication in the morning, and four types in the evening.”
Living with lupus means Sejal has to take precautions to accommodate her needs effectively.
“I’m not allowed to be exposed to the sun. I have to cover my body and use SPF 50 at all times, both on holiday and at home.”
Lupus can change life as you know it and result in challenges that can be difficult to overcome.
“I appear normal, so anyone who doesn’t know I’ve got an illness wouldn’t be any wiser, which makes people question what the ‘truth’ is. If your illness isn’t physically visible, I find people can be cruel, especially when it comes to accepting that a young person can have a chronic illness.
“The most challenging things are the fatigue and aching. These symptoms can make it difficult to get out of bed, and they seem to be impossible to shake off.”
The Impact of Lupus on Sejal and Her Family
“I don’t think there are enough words to explain how much this illness has affected my family and me. What we believed to be a minor rash and tiredness has turned into a lifelong illness.
“The endless number of hospital appointments meant I needed a lot of time off work. Consequently, I had to be signed off as sick, which resulted in me losing my job.”
Luckily Sejal has a very supportive family who have helped her overcome the challenges of lupus.
“Lupus has affected me physically, emotionally and professionally. My family have really suffered. However, they’ve been there every step of the way, along with my boyfriend and friends.”
Advice to Others
Sejal has plenty of advice for those who are living with lupus and believes that patience is key.
“Lupus is a complex illness, but you’re not alone. There’s endless advice available, but I think the following are most important:
1. Read and learn about your illness. Knowledge of it will empower you, enable you to understand what is going on and understand your body better too.
2. Listen to your body – if you’re tired, rest. It’s easier said than done, and breaking your routines can be difficult. Be reassured it won’t last forever, so while it’s necessary, doing these things will hopefully help you towards a swifter recovery.
3. Be patient. This is what I am consistently told, and it’s imperative. I never thought I’d ever look or feel like myself again, but two years on, I’m finally getting a sense of the old me.”
Help and Support
Sejal visits her GP regularly and attends LUPUS UK support groups to help her with the challenges of living with Lupus.
“My GP sees me regularly. She has become like a friend, who knows me well and always thinks about me and my needs.
“I have also started attending LUPUS UK support groups that take place every three months. Although it still feels surreal that I have lupus, it gives me a sense of belonging and comfort to be amongst other lupus patients.”
LUPUS UK is the UK’s national charity for the condition. We spoke to the team at LUPUS UK to find out more about the great work they do.
“LUPUS UK was started as a support group for people with lupus in the late 1970s. It wasn’t until 1990 that the name ‘LUPUS UK’ was adopted and in 1995 it became a registered charity.”
It’s the only registered charity for people affected by lupus in the UK, so they’re involved in a number of activities to help raise awareness. This includes producing information leaflets which are provided to patients free of charge and hosting support groups across the UK.
“Our Regional Support Groups organise many smaller medical lectures, drop-in clinics, coffee and chat meetings and fundraising events.”
Donations and Funding
LUPUS UK donates any funds which are raised to the relevant areas to help lupus patients effectively.
“Any funds go towards our various projects including the funding of Specialist Lupus Nurses, research grants, facilitating support group meetings and producing our range of information publications, including the LUPUS UK website.”
There are lots of ways that others can get involved to help people with lupus. Visit LUPUS UK to find out how.