Sascha Gallardo - May 19, 2023
Lupus is a chronic condition that can affect various parts of the body, including joints, skin, kidneys, heart, and more. Characterized by unpredictable flares and remissions, lupus brings with it a range of symptoms such as fatigue, joint pain, skin rashes, and organ inflammation. Lupus can affect men, women and children.
While the exact cause of lupus remains unknown, it is believed to involve a combination of genetic, environmental, and hormonal factors. At present, there is no cure for lupus. Treatment focuses on managing symptoms, preventing flares, and minimizing organ damage through a multidisciplinary approach that may include medications, lifestyle changes, and regular medical care.
Lupus, a condition impacting millions of individuals globally, continues to elude widespread awareness and understanding. For instance, a survey by the Lupus Foundation of America in 2019 revealed that a staggering 63% of Americans had never heard of or possessed minimal knowledge about this disease, despite its estimated prevalence of 1.5 million people in the U.S. alone [1].
A network of friends and family can give some support, lending a hand with errands and chores.
A good way to begin to explain lupus is to clarify what lupus is and is not in order to communicate compassionately and intelligently with a patient who is battling the condition. Most people truly do not understand what it looks like as a condition.
Don’t
- Doubt their condition. Lupus patients usually experience flares periodically. They may be suffering from symptoms for a number of days or even a few weeks and then seem to be fine the following week.
It is important to know that just because a person looks okay doesn’t mean they feel okay!
-
Judge them as lazy. Since many people do not understand the real impact of lupus on the patient’s daily life, they are often judged as lazy, weak, or lacking motivation. But the truth is, lupus patients may struggle with daily activities and have limitations that affect their ability to work, study, or participate in social activities. It’s important to recognize that lupus is a real and debilitating condition that can have a significant impact on a patient’s physical and mental health.
-
Tell them “You look fine.” When people learn someone has a chronic illness, especially something that can potentially be serious, it’s not uncommon for them to expect to see some physical manifestations of the disease. But lupus is one of the so-called invisible illnesses. Other people may not be able to tell they are sick just by looking at them.
-
Compare their condition to another illness. When we talk to someone, we want to let the other person know that we understand them. In some cases, we do this by sharing information available to us. It is not uncommon for us to talk about someone we know who suffers from a chronic illness that has a similar symptom like rheumatoid arthritis.
As good as the intention might be, this can make the patient feel even more misunderstood. Aside from this, comparing lupus to another condition like rheumatoid arthritis seems belittling. Many lupus patients not only suffer from joint pain. Their disease can also damage different organs like the heart, lungs, and kidneys.
Do
-
Learn about lupus. One of the best things you can do to help a patient dealing with lupus is to learn as much as you can about this disease. Aside from learning basic information like the symptoms, causes, and treatment, it would help if you will try to find out how patients live with this chronic illness. The more you know about lupus, the more sensitive you will be to their situation.
-
Believe them. If you know someone who is affected by lupus, simply believing would already be a great help. When they say they can’t meet you or cannot do something they were supposed to do because of a flare, be more understanding instead of having doubts. It doesn’t matter if they look fabulous when you see them a few minutes ago. Knowing that they don’t need to explain themselves to you is one less stress they need to worry about.
-
Listen to them. Whenever a person talks to us about their problems, one of our initial responses is to offer something we think might be valuable like some tips. However, we forget that in some situations, people don’t need suggestions. They themselves might have already read and tried everything they could find on the internet to improve their condition. In some cases, they just want someone who will listen to them.
-
Ask how you can help. More often than not, we want to help a person in need, especially someone close to us like a friend or a family member. Sometimes we do this by bringing food, sometimes by offering advice. However, there’s a good chance that they don’t actually need what we are offering. By asking the other person the things they really need help with, we would know exactly what we can contribute and actually help the person.
There is no doubt that living with a chronic illness like lupus can have a huge impact on a patient’s life. The people around them have the capacity to either alleviate some of the burdens that come with lupus or make things even worse for the patients. Knowing some of the do’s and don’ts when interacting with a patient can go a long way.
And if you or someone you know is affected by this condition, join our free Life with Lupus Patient Support Community so that you can have a safe and supportive online community.
Reference:
[1] Lupus Foundation of America (2019). Lupus Foundation of America Survey: More than Half of Americans Lack Awareness, Understanding of Lupus. <https://www.lupus.org/news/lupus- foundation-of-america-survey-more-than-half-of-americans-lack-awareness-understanding-of-lupus>