Talking to Your Family About Lupus: Tips & Tricks

Lupus has the potential to affect every area of your life, and many people find it difficult to help the people closest to them understand what they endure and what they need.  

It’s important to talk to your family about lupus because managing lupus requires constant tracking of symptoms and medications, and this can be a huge obstacle for people with lupus on their own. Having supportive, well-informed family can help prevent feelings of isolation, depression, and anxiety from developing. These are serious issues that cause a stress load that you, as a person with lupus, shouldn’t have to carry along with your other stresses! However, even when symptoms are down, you are only human and very busy. Having a supportive family can really help with keeping up with medications, going to appointments, encouraging exercise and keeping up a proper diet.

How can you help the people around you understand your needs?

How to Address Key Points

There are a few misunderstandings and frustrations that come up more than others – here’s a guide to how to address them and explain them to your family and friends.

Not Looking Sick

Systemic lupus erythematosus is an autoimmune disease – this means that the body is attacking itself. The symptoms can be visible, such as malar rashes or lesions in cutaneous lupus. However, most of the time, the immune system is attacking the inside of the body: The kidneys, joints, blood vessels, heart, nerves, gut, even the brain – any organ can be affected, and a laundry list of symptoms can come from it. Many of these symptoms are only known to the person with lupus. However, the pain and symptoms are real and can greatly hinder the lives of people with lupus – just as real as any other form of arthritis, back pain, or internal disease (like cancer.) 

People with lupus also can often develop neuropsychiatric diseases, which are caused by the damage of lupus inflammation, the stress of dealing with lupus, and the frustration of being misunderstood. Another invisible symptom of lupus can be memory troubles, which is caused both by inflammation of lupus and the exhaustion that lupus causes. However, these troubles are very real, and creates a symptom experienced by nearly 60% of people with lupus sometimes called brain fog. Taking care of lupus and reducing inflammation can help clear the fog.

With those ailments, you can’t always tell that a person is ill, but their life is heavily affected. It is the same thing with lupus.

Medications and Chronic Illness

People with lupus will always have lupus, since there is no cure yet. Symptoms can come and go because the immune system is effected by and reacts to things that occur in the outside world or external substances that enter the body such as foods or allergens like pollen. A sudden increase of symptoms is called a flare and flares can last from days to even years. Though the flare might go down, and a person with lupus might experience a period of time without apparent symptoms, it is always there in their body. 

Medications make it easier to stop a flare-in-progress and, also, to prevent it from starting, which helps people with lupus even when these medications have serious side effects – including weight gain, which is a notoriously difficult side effect to shake off due to the corticosteroids changing how the body processes and stores energy from food. Another such medication is immunosuppressive drugs. While these can help to stop symptoms of lupus, these drugs also leave people with lupus vulnerable to infection. 

The medications are worth it because not having flares gives the body needed time to heal from the damage of lupus, which may, in turn, make the body less vulnerable to certain flare triggers.

Weight and Diet

People with lupus already get a great deal of advice from their doctors, they don’t need more. In the end, people with lupus are on the front lines of their disease. They are the ones most aware of their situation and what makes them feel good, what makes them feel bad, what causes flares, and what they are actually able to do to help themselves. Due to pain, it can be difficult to exercise and due to flare triggers and food availability, it can be difficult to keep to a proper diet. Most people with lupus are in the process of figuring out how to manage their disease. Nagging or unasked-for recommendations are stressful, annoying, and it is also very likely that they have tried that method already. 

It’s much better to be supportive – help with cooking, cleaning and exercise, be encouraging, and be a good listening ear. These can be much more effective than advice.

What is Fatigue

Fatigue is a feeling of tiredness and a lack of energy, and it has many different causes. In lupus, there are three main reasons for fatigue:

The body is attacking its own cells, so it is expending energy on a misguided fight against itself, as well as on healing the damage. That takes away energy that a person might otherwise use for other activities.

Worrying about lupus, and the stress from having to deal with the pain and other symptoms of lupus (including not being believed by doctors or family!) uses up energy and can be exhausting on its own. Managing lupus through medications and other strategies and having a supportive and understanding family can stop this particular drain on their energy.

Everything is literally more difficult to do. Joints get stiff and are harder to move, blood vessels get inflamed and the heart has to work harder to get the same result, muscles and other organs are inflamed and not able to operate at full efficiency. Of particular note, the brain and nervous system are affected by lupus and sometimes nerve signals have to travel through gunked up areas of inflammation or take alternate, longer routes entirely. All of the small additional difficulties and efforts required add up.

The exhaustion that lupus brings is much like how someone feels during a fever – lethargic and miserable. It isn’t laziness if someone with lupus cannot get out of bed that day – there are just a lot more invisible tasks that their body had to add to the checklist before getting up. Though they may look ‘healthy,’ many things are happening inside them and sometimes a person with lupus has to let certain tasks, even important ones, fall to the wayside in favor of essential tasks like eating, self-care, or taking care of a dependent. Even with prioritizing, people with lupus sometimes have to overextend their reserves and replenish those reserves from tomorrow’s energy. 

Spoon theory was designed as a way to help people understand, visually, what is happening with the energy levels of a person with lupus. You can read more about it here. 

Medication and proper treatment can help with fatigue, and supportive family members can take some of the load off. Fatigue can also fluctuate with the seasons. 

Why You Can’t Go Out and Do Things

People with lupus want to spend time with their families and friends. However, a lot of activities can make lupus worse, or are difficult to do with lupus symptoms like pain, fatigue, or depression. Because people with lupus have to be careful to avoid getting seriously ill or hurt, they often cannot do certain activities with other people.

People with lupus can go to school and work, but even with mild symptoms, seemingly ordinary activities become difficult. People with lupus have to learn their limits and having people in their lives who encourage them to push beyond those limits risk causing harm. Read more here about searching for jobs and lupus.

How They Can Be Helpful

A person with lupus has to push through each moment just to get to the end of the day. Taking some of the load off of a person with lupus can have a big impact on any one of those moments. Carrying groceries, doing some of the housework, keeping an eye on temperature, keeping records, assisting with care – all of these can be a big help take some of the stress out of everyday life for people with lupus.

Stress is invisible, but it has an enormous effect on the body. Managing and reducing stress is an important part of treating lupus, almost as important as medications. However, both stress management and medications are important – one without the other does not meet the needs of people with lupus.

However, potential helpers should ask first – help without being asked or asking seems nice but can sometimes be harmful, since they may not help with the right thing in the right way.

Supportive family and friends are vital to getting the best care and helping a person with lupus open a dialog with their doctor that allows them both to make the best decisions for their lupus. People can also help the entire lupus community by taking a stand and speaking up as advocates for people with lupus.

Take care of your skin and the microbes on it, and it will take care of you.

What If They Don’t Understand?

Some people just will not understand no matter how much you explain it to them, unfortunately. At this point, just leave a pamphlet on lupus out and don’t spend any more energy on it. You don’t have enough to spare. Forgive them for being unable to understand and forgive yourself – because it’s not your fault. You have done your best, and it’s their turn to meet you halfway in understanding.