I recently went to my GP to continue my fight to get answers for various pains in different parts of my body. Due to my Black Caribbean heritage, my GP wanted me to be tested for lupus (Lupus Foundation of America). Because I don’t know anything about lupus, it seemed a good topic to cover for my blog. Thus, in this article, we will explore what it’s like to live with the condition, its impact on daily life, coping strategies, and the importance of a support network. I hope you find it educational.
What Is Lupus?
Lupus is a complex and often unpredictable disease that can manifest differently in each person. Common symptoms include joint pain, skin rashes, fatigue, fever, and sensitivity to sunlight. However, lupus can also affect internal organs such as the kidneys, heart, and lungs (Mayo Clinic), leading to more severe health issues. This would also explain why I’m being sent for a liver scan, due to me having pains in and around my liver.
Lupus is an autoimmune disease where the immune system attacks healthy tissues and organs (Lupus Research Alliance), leading to a range of symptoms and complications. Flare-ups of the condition, periods when symptoms worsen, can be triggered by stress, infections, or exposure to ultraviolet light. There are four types of lupus, with systemic lupus erythematosus (SLE) being the most common form (Lupus Foundation of America).
Common Lupus Symptoms
- Around half of the people with the condition experience a characteristic red “malar” rash or colour change which appears across the cheeks and bridge of the nose in the shape of a butterfly (Lupus Research Alliance).
- Extreme fatigue, where a person with the condition will feel very tired all the time regardless of if they’ve had enough sleep or not.
- Fingers or toes can turn white or blue in the cold or when you feel stressed (Lupus Foundation of America). This was something my GP asked me about, but I’ve never had this symptom.
- People with SLE have a high chance of experiencing unexplained fevers with temperatures over 100°F or 37.8°C (Lupus Research Alliance).
- Most people with the condition may experience pain and stiffness in their muscles and joints, with or without swelling (CDC). In fact, the Lupus Research Alliance says that an estimated 90% of people with lupus will have arthritis. This is something I’ve also had a referral for so I can talk to a specialist about if I have arthritis. My last blood test had a very high count of something that indicates the potential presence of arthritis.
- Headaches are a common symptom (Lupus Foundation of America), which again was something my GP asked me about, but not something I have issues with.
Living With Lupus
Living with lupus can significantly affect a person’s daily activities and overall quality of life. Dealing with chronic pain, fatigue, and other symptoms can make it challenging to carry out routine tasks and engage in social activities. As a result, people with the condition may experience limitations in their professional life and may need to make adjustments to their work schedules or career choices.
Effective management of lupus involves a multifaceted approach. People with the condition will benefit from working closely with rheumatologists and other healthcare professionals to create a treatment plan tailored to their specific needs. This plan may include medications to control symptoms and prevent flare-ups, as well as lifestyle modifications such as a balanced diet, regular exercise, and adequate rest.
To better highlight what it can be like to live with lupus, below is a quote from Hazura’s experience taken from Biogen.
While at university in London, studying Chemical Engineering, my symptoms got progressively worse. With crippling joint pain, walking to classes was sometimes impossible. After many doctors’ visits I was finally diagnosed with lupus at the age of 19. For the first time I was given a name for my disease.
Lupus, in many ways, seems like an “enemy” living within me. Living with lupus means learning when the enemy will attack through series of “flare ups.” The trigger could be anything from food, stress, doing too much in a day or lack of sleep. It can show itself as something harmless, like an ulcer in or around the mouth or nose, slight skin sensitivity or an occasional dry or red eye, before it progresses to red or dark blotches on the skin and painful stiff joints. So much so that even the simple task of brushing my teeth can be painful.
Living with lupus presents unique challenges, but it’s essential to remember that people with lupus can lead fulfilling lives with proper management and support. By prioritising self-care, seeking medical guidance, and fostering strong relationships, those affected by lupus can embrace hope and resilience on their journey with this chronic condition.
Coping Strategies For Lupus
A study by Haupt et al. (2005) found that psychoeducational interventions that covered topics such as information about lupus, symptoms, and therapeutic options helped people to manage the effects of having the chronic disease. They also found that psychotherapeutic interventions that covered things like how to cope with stress and everyday problems, managing fatigue, and pain management, also had a positive effect on living with the condition.
- Try to limit the time you spend in the sun and in fluorescent and halogen light (CDC). Wrapping up, covering your skin, wearing a hat, and using sunblock should all help with this. It’s worth remembering that you’ll also need to apply sunscreen to all areas covered by your clothes, as most clothing only protect your skin to the level of SPF 5 (Johns Hopkins Lupus Center).
- Because you’ll need to limit your sun exposure, make sure to take a vitamin D supplement. Being of dark skin in a cold country, I already need to do this to help maintain a more healthy body.
- Take a leaf out of the spoon theory and manage how you use your energy each day.
- Try to get enough sleep (Everyday Health), which is often easier said than done. But CBT-I might be able to help with that.
- Seek work adjustments to help you remain at work (Lupus Foundation of America).
- Exercise regularly as this can help reduce fatigue. You’ll also have the bonus of getting endorphins (Medical News).
- Try to nature healthy habits and a positive outlook (Cornet et al., 2022), because that’ll help with maintaining good mental wellbeing, which will help with avoiding stress.
- Seek to identify what causes your flare-ups (Lupus.net). An easy way to do this might be to keep a journal.
- Work with your doctors and other medical professionals and have regular appointments (National Institute of Arthritis and Musculoskeletal and Skin Diseases).
- Make time for yourself (Lupus Foundation of America). Just because you have this condition, that doesn’t mean you have to be thinking about it all the time. Plus, taking a break is something we can all benefit from. Hobbies and interests play a vital role in maintaining good mental wellbeing.
- As you might already be able to guess, living with a chronic illness can take a toll on one’s emotional wellbeing. Feelings of frustration, anxiety, and even depression are not uncommon among people with the condition. Therefore, seeking support from mental health professionals is advisable.
- Use heat or cold packs to manage joint and muscle pains, as well as headaches (Lupus Foundation of America).
- Having a solid social support network is crucial for those living with lupus. Friends, family, and understanding coworkers can offer much-needed encouragement and understanding. Support groups, either in-person or online, also allow people to connect with others who share similar experiences, fostering a sense of community and belonging. They’ll also be another source of emotional support.
Living with a chronic autoimmune disease like lupus can be a challenging journey filled with uncertainties, but it’s also a testament to the strength and resilience of those affected. Reading what I’ve read to create this article, it doesn’t seem to me that I would have this condition, but that’s why experts exist. They can find out for sure if I have it or not, and they can do the same for you if you’re concerned you may have it. Fingers crossed I don’t, as I already have several health issues to manage and they’re already more than I can handle.
For this article, I decided not to write about the potential complications of having lupus, as that didn’t seem necessary for a basic understanding of the condition. However, one potential complication did catch my attention which I thought I’d add to the summary because it could explain one of my other conditions. This complication is that people with lupus are at high risk for insulin resistance, and thus, diabetes (Lupus Research Alliance).
I have insulin resistance that presents as reactive hypoglycaemia. I also take metformin to avoid becoming diabetic as a result of my reactive hypoglycaemia. It also seems that quite a few of my symptoms could be explained by lupus, but they have also been diagnosed as other conditions already. This is why you need to see specialists.
Anyway, raising awareness about lupus is essential to increase public understanding and support for those affected by the disease. Advocacy efforts can also lead to more research funding and improved treatment options for people with the condition. I hope my article on my little blog can play its part in this.
As always, leave your feedback in the comments section below. Also, please share your experiences with lupus in the comments section below as well. Don’t forget, if you want to stay up-to-date with my blog, then sign up for my newsletter below. Alternatively, get push notifications for new articles by clicking the red bell icon in the bottom right corner.
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Unwanted Life readers.
Cornet, A., Mazzoni, D., Edwards, A., Monzani, D., Pravettoni, G., Andersen, J., & Mosca, M. (2022). Coping with systemic lupus erythematosus in patients’ words. Lupus Science & Medicine, 9(1), e000656. Retrieved from https://lupus.bmj.com/content/9/1/e000656 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9109093.
Haupt, M., Millen, S., Jänner, M., Falagan, D., Fischer-Betz, R., & Schneider, M. (2005). Improvement of coping abilities in patients with systemic lupus erythematosus: a prospective study. Annals of the rheumatic diseases, 64(11), 1618-1623. Retrieved from https://ard.bmj.com/content/annrheumdis/64/11/1618.full.pdf.