5 Misconceptions to Avoid When Supporting a Loved One with Lupus

If you have a loved one fighting lupus, you know the challenges they face. Lupus is an autoimmune disorder where the immune system attacks healthy body tissue, causing painful inflammation of the joints and potentially damaging internal organs such as the kidneys and heart. While many have heard of lupus, there are still many misconceptions surrounding the disease that can make it difficult for those living with it and their loved ones. Here are five common misconceptions to avoid when supporting a loved one with lupus:

1. Lupus is an easily understood disease

Despite the fact that 1 in 185 Americans suffer from lupus, many people are still ignorant of the disease. Some believe it is contagious, which is entirely false. Others believe it only affects the elderly, but in reality, the most common age group to be affected is 15 – 45 years old. Lupus is also primarily a women’s disease, with only about 10% of sufferers being men. The public awareness of lupus has improved thanks to Toni Braxton, who has come out about her daily battle with the disease. It’s important to educate yourself and others about the reality of lupus.

2. Lupus sufferers are lazy

Many people do not understand conditions with chronic fatigue, leading them to believe that sufferers are lazy and merely need to “get on with it”. Lupus is no exception, with Toni Braxton comparing it to having the flu every day. It’s important to support your loved one by acknowledging that they will need more rest than others and that their fatigue is not a choice but a symptom of their disease.

3. Lupus sufferers cannot have children

Many people believe that lupus makes pregnancy risky and that the child will be born with birth defects. This is not true. While there are some risks associated with pregnancy for women with lupus, with careful monitoring it is often possible for them to carry a child successfully to term. It’s important to remember that planning for pregnancy when the disease is in remission can make things easier for lupus sufferers.

4. Lupus is easy to diagnose

Diagnosis of lupus is not straightforward, with the disease often called “the great imitator” as its symptoms can mimic many other conditions. Blood work is necessary for diagnosis, but it is much more complicated than a simple visit to the doctor. The best person to treat lupus is a rheumatologist, but there are not enough rheumatologists to go around, which means lupus sufferers may not have access to the best-qualified specialists.

5. Lupus is genetic

While there is a small genetic factor in lupus (about 5% of parents will pass on the disease), the environmental issues involved are not yet fully understood. The fact that certain ethnic groups are at greater risk suggests a genetic link, but research has failed to identify a responsible gene or group of genes. It’s important to avoid blaming lupus sufferers or their parents for their condition.

Living with lupus is challenging, and it can be difficult for loved ones to understand what their friends/family members are going through. Symptoms can be vague, and mental and physical suffering often goes overlooked. Being open and honest about the disease can help family members accept changes in lifestyle and meet the patient’s needs. Education, support and empathy are key to helping those suffering from lupus to live their lives as fully as possible.