Living with Lupus - The Lesser Known Side of the Story


Living with Lupus - The Lesser Known Side of the Story

Imagine waking up one day only to find out that your lupus test is positive. There are a thousand thoughts that sweep you off your feet and, your world seems to be in a conundrum altogether. This chronic illness is now mind-boggling, and you have a thousand questions swarming your mind. What are my limitations? What treatments should I take?  How to seek help? Which lifestyle changes will affect me negatively and positively? How will my family react to this? You start wondering about the daily struggles of this life.


According to a recent estimate, in the UK alone, up to 50,000 people have Systemic Lupus Erythematosus (SLE) or Lupus. In terms of ratio, out of every 1,000 persons, one person has Lupus. Different genders and ethnicities have shown varying vulnerability to SLE. Women make up for the 90% cases of Lupus as compared to men. Mostly, women of childbearing age develop this disease, relative to menopausal women.


Ethnicity has proven to play a big role in determining who will be affected by Lupus. People of colour show a greater tendency to acquire SLE as compared to the white population, as reported in surveys conducted in the UK amongst different ethnicities. The study showed that Lupus commonly effected Hispanics, Asians, and Afro-Caribbean inhabitants as compared to Caucasian Americans, Canadians and Spaniards.


Three types of Lupus have existed in patients, which vary in their signs and symptoms. SLE affects the entire body and all the organs and hence the term “systemic”. Discoid Lupus Erythematosus, also known as Cutaneous Lupus, is a localized form of Lupus that affects the largest organ in your body, i.e. your skin. Another form of Lupus is Drug-Induced Lupus Erythematosus, which is commonly induced by drugs like hydralazine (prescribed for hypertension management), procainamide (for arrhythmias ), and isoniazid (for tuberculosis). Neonatal Lupus is another form of Lupus which is commonly seen in newborns of the affected mother.


It doesn’t matter which type of Lupus you are dealing with, it is indeed, a debilitating illness which is still unheard of by many. SLE, which is the most common form of Lupus, is also the most complicated one with multiple organs involved and many misunderstood symptoms which overlap with symptoms of other diseases. Daily struggles with Lupus have enormous physical, mental, and social lash back. The daily challenges with joint pain, hair loss, fatigue etc. are joined by uninvited flare-ups to make things worse. Then there are days you feel like you can climb a mountain. This unpredictability is one cause of stress and depression, let alone the pain and suffering which the flare-up brings.


The Emotional Roller Coaster and Fighting Back

Depending on the cause, sometimes low self-esteem poses a great challenge for people living with Lupus, especially those freshly diagnosed. They don’t know who will believe them or understand their pain. Physical symptoms, like the prominent butterfly rash and weight gain from corticosteroids, are also additional factors. To be your best during an emotional breakdown, join a support group and push yourself into some destressing activities. Stress needs to be nipped in the bud as it is a cause of flare-up according to many researches. 

The Mental Break-Down and Coping with Anxiety 

Visit your doctor regularly to stay updated on important information regarding your condition. Take your responsibility and get good sleep, eat well and keep activity levels up-to-the-mark to avoid over-stressing. Discuss with your doctor, which exercise routines and workouts are allowed for you—set goals which help you get closer to a better version of yourself. Take pride in your achievements without stressing yourself out. 

So you or anyone you know have Lupus or some other invisible illness? would like to find some more infomation about Lupud please check out:


Lupus UK https://www.lupusuk.org.uk/what-is-lupus/

Lupus Trust: https://www.lupus.org.uk/

Lupus UK FB Group: https://www.facebook.com/LUPUSUK/


You can also check out my tips to cope through a Lupus flare HERE

If you do suffer with Lupus please share one of your coping mechanisms below in the comments 



Lee-Anne x 

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