Concerned You Have Lupus? The Next Steps To Take

By Ella Woodward

Systemic lupus erythematosus (SLE), more commonly known as lupus, is an autoimmune disease where the immune system attacks the body and causes inflammation in the joints, skin, and organs. Sufferers experience fatigue, skin rashes, and joint pain.

Unfortunately, there’s no cure for lupus. However, early diagnosis helps mitigate symptoms considerably. It’s important to be diligent so that your quality of life can be as rich as possible. Concerns can also be overwhelming when numerous what-if scenarios materialise as if from nowhere, so it’s worth replacing those thoughts with concrete details. Remember, your mental well-being can suffer from physical conditions too.

Your fears need to be met with a plan of action. Here are some of the steps you should consider taking if you’re concerned you have lupus.

Learn More About Lupus

Many people will self-diagnose themselves with illnesses with a quick Google search. Despite everyone knowing this to be an irrational step, it’s still a common way to behave.

Ideally, you should take a more pragmatic and research-intensive approach. Lupus can be extremely challenging to live with, so you must consume the correct information appropriately. For example, there are two types of lupus. One is known as discoid lupus, while the other is called systemic lupus. You’ll need to cast a wide net in your investigation to learn the ins and outs of each.

Try to learn more about the most common types of lupus first, which would be systemic lupus. Some of the symptoms can perhaps cause more immediate concern to you, including depression and anxiety, hair loss, and red rashes over the nose and cheeks. After that, you can branch out into more niche areas of the autoimmune disease.

Separate considerations should be made for those who are pregnant and dealing with lupus. Unfortunately, higher chances of miscarriages can occur, but typically not in those who control their symptoms well. Certain contraceptive pills may cease being recommended, too, depending on the severity of the disease, so certain lifestyle adjustments may be required there too.

Ultimately, if you endeavour to stay informed, you can usually mitigate how much control lupus has over your life. Let your knowledge give you confidence and persist with your learning. You may still have concerns afterwards, but they won’t have such an iron grip over your being.

Look into Genetic Factors

Genetics can play a role in who gets lupus and who doesn’t. Therefore, broaching the subject with parents and grandparents may be worthwhile.

Of course, if they have experience dealing with lupus, they may be able to abate some of your fears in managing the disease. Going through such strife together may even make you closer, helping you establish common ground and empathise with each other’s struggles. Autoimmune diseases can be hard to deal with, so even simply having someone you love to talk to can enormously affect your well-being.

Other genetic factors can determine who is more likely to get lupus too. While anyone can get lupus, certain demographics are more likely to suffer than others. Nine out of ten patients are women, and people of a minority ethnic heritage are more likely to suffer from the disease. Research into the how and why of these circumstances is still ongoing, but if you’re concerned about having lupus, these factors may influence its extent.

Voice Concerns Firmly

As mentioned previously, early diagnosis of lupus is key. Delays can be needlessly costly, so you may need to be more firm when voicing your concerns.

For example, one woman made repeated trips to a doctor before the doctor ever ran a blood test and diagnosed lupus. In the same account, she acknowledges that she was fortunate, as, for others, it can take even longer to identify the issue. There are also claims about GPs not knowing much about lupus. Considering the article was published in 2019, it’s hard to imagine things have changed significantly, especially with things like coronavirus dominating most people’s attention.

Therefore, it may be prudent to voice your suspicions more assertively to your healthcare professional. Stressing the prominence of joint pain over other symptoms may help your doctor realise something more serious is occurring. That’s the strategy that seemed to work for the example above.

Of course, there’s a fine line to walk here. You shouldn’t assume you know better than the healthcare professional seeing you, nor should you mistreat them when airing your worries. The prospect of lupus can be daunting, but you should endeavour to be respectful, if persistent, at every opportunity.

Be Open to Continued Treatment

The treatment plans for lupus can be more involved than one might expect. However, each session should give you feelings of comfort and agency, enabling you to tackle the autoimmune disease directly.

Your healthcare professional will likely recommend that you subject yourself to regular scans and X-rays. Complying will ensure that your organs are functioning correctly, as lupus can cause damage to many of them.

They may also advise that you take urine and blood tests. This will let them check that you aren’t experiencing kidney problems or anaemia.

Many people can feel tempted to skip appointments when they believe a condition is under control and hasn’t ‘bothered’ them for a while. Such liberties can’t be taken with lupus. If you’re concerned that you may have lupus, you should work on adapting your mindset and prepare yourself for long-term treatment. Your level of endurance counts for a lot here. 

Work with Charities

Once you’ve been worried about having a condition for a long time, you’ll likely want to do something about it that doesn’t simply serve yourself. Instead, your experiences may help you empathise with others and compel you to take the fight against the disease.

When you’re eager to support others with the condition, proactive steps are important. You can find perspective and help others cope by working with a dedicated lupus charity, enabling you to help make lasting change. Making a difference for causes close to your heart can be immensely uplifting and help you cope with your burdens as well.

Communities often form around charities. Newsletters, fundraising events, medical talks, and local get-togethers can all transpire within them. You may be able to make new contacts and friends, communicate with like-minded individuals, and feel a growing sense of self-acceptance. Moreover, you can promote these entities’ good work on social media and learn more about the condition as new research and statistics are released.

Illnesses such as lupus can be isolating and taxing. However, to some extent, you can have some say in its influence over your life. Should you be diagnosed with lupus at any stage, you’ll know what communities can best support you. Moreover, you can start to create positive things out of it, and your life could go in a whole new exciting direction because you decided to work with a charity first.


Concerns over any medical condition should never be debilitating. Try to use your fears as fuel and take proactive steps to better your situation. It can all be used as a time for learning, nurturing familial connections, practising self-care, and even helping others. If you adopt such a resilient mindset, then anything is possible. Your outlook on life counts greatly in such situations and will ensure your concerns never mutate into full-blown hysteria.

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