Lupus can cause many different symptoms and many different emotions. As a result, a suitable way to help someone with lupus is by listening to them and asking what they need.
This shows the person that others care about them. Taking time to educate themselves about lupus or offering emotional or practical support can also help.
Keep reading to learn how to help someone with lupus, including what to say, what not to say, ways of offering support, and caregiving.
Learning a loved one has lupus can be difficult. People may worry they will say the wrong thing or not know what to say.
First, it is important to know that there is no perfect response. What matters is whether someone expresses genuine care. Focusing on this can help individuals think of what to say organically.
Additionally, the goal should not be to try and make the person feel better or cheer them up. Doing this can sometimes result in people feeling that their emotions are not important or valid.
Instead, try to provide a safe space for the person to say how they feel and how their condition is affecting them. This could involve:
- Asking how they are: A direct question such as this serves as a welcome invitation to share updates and difficulties.
- Validating their feelings: There is no right or wrong way to feel about having lupus. A person can validate how someone else is feeling by saying things such as “it makes complete sense you feel that way” or similar phrases.
- Active listening: This means giving a person full attention, allowing them to speak, and then reflecting what they have said back to them. This shows understanding.
- Showing empathy: Others cannot always know what it is like to have lupus, but they can still show empathy by imagining themselves in the person’s position. For example, they might say, “that sounds like it was scary” or “that is so frustrating.”
- Being available: Support from caring friends and family members is important for people with any chronic condition. Letting the person know they have someone to talk with when they need it can help.
While there is no perfect thing to say to someone with lupus, there are some things to avoid saying. These statements can minimize another person’s feelings. They include:
- “I know how you feel”: Unless a person has had a serious condition, they do not know how it feels to have lupus. It is also a suitable idea to avoid making comparisons between two very different experiences. For example, the tiredness that comes from insufficient sleep is not the same as the fatigue of lupus.
- “It could be worse”: Although people can say this with good intentions, it minimizes the seriousness of living with a chronic condition.
- “Things will get better”: Lupus does not have a cure, so saying demonstrates a lack of understanding. People need to avoid trying to predict the future, especially if they do not know much about lupus.
After hearing about a lupus diagnosis, people can provide support with the below methods.
Learning about lupus
Some people appreciate their friends and family learning about lupus. However, when doing this, it is important to consider the source of the information.
In some cases, the person with lupus might not mind educating others, but repeatedly doing this can also be taxing. If someone prefers not to explain the condition in detail, loved ones can also learn by reading online articles or studies or by listening to other people’s stories.
Offering emotional support
Emotional support can look different, depending on what a person needs. It may help to:
- visit or call them just as regularly as usual, or more, if they want
- be generous with reassurance and consenting hugs
- allow them time to talk about lupus if they want to or offer a distraction if they prefer to think about something else
- continue socializing together, even if this means adapting activities to make them accessible
- set aside time for doing enjoyable things
If a person seems like they are having difficulties, loved ones can also help by encouraging them to seek professional support.
Offering practical support
Offering practical help with tasks can be a valuable way to help someone with lupus. Some examples of this kind of support include:
- driving the person to appointments
- cutting the grass
- helping with cleaning
- walking their dog
- providing homemade freezer meals
When someone needs a lot of help, it can help to delegate tasks among multiple people. For instance, a neighbor could help maintain the yard while a family member could help look after a pet.
However, remember that people with lupus all have differing physical needs that vary day by day. As a result, it is important to follow the person’s lead.
If they want to try to do as much as they can independently, or on some days they need more support than usual, listen to them. Trying to step in and do everything for them can be counter-productive and might feel patronizing.
For people who will be providing in-home care to someone with lupus, supporting them may involve some or all of the above strategies.
The Lupus Foundation of America recommends developing a daily care plan that includes simple instructions for staying on top of everyday tasks. The plan should:
- identify the person’s healthcare needs, including any problems
- describe the necessary caregiving tasks and the steps involved
- organize the tasks into categories or list them in order of priority
- include the contact details for family members, other caregivers, or community organizations that can help
A medical care file can help keep track of appointments and health records. This may include a person’s:
- medical history
- current medications, including:
- special precautions
- insurance information
- emergency contacts
Caregivers also need to learn the signs indicating a person needs emergency care and have a plan in place for what to do if they occur.
Caregiving can involve a lot of work, so it is also important for caregivers to take care of themselves in any way they can. This could involve:
- taking time to do things they enjoy
- eating a balanced diet
- knowing their limits and recognizing when to stop
Some people may want to try and understand lupus by learning about how it feels. However, the condition can affect almost any organ in the body, and the symptoms can come and go.
Lupus is also a condition that involves flare-ups, where symptoms worsen, and remissions, where symptoms get better. As a result, a suitable strategy for knowing how someone is feeling on any given day is to ask how they are.
Some of the symptoms a person with lupus might experience include:
- joint and muscle pain
- chest pain due to inflammation in the lining of the lungs
- fever of over
100°F (37.7°C)due to inflammation or infection
- hair loss
- mouth sores
- sun sensitivity
- chronic or extreme fatigue
- kidney conditions, such as nephritis
- difficulty remembering things
- eye conditions, such as eye inflammation or dry eye
- anemia, which is a low red blood cell count
- blood clotting
Helping someone with lupus can start with good communication. This includes expressing empathy and a willingness to listen.
Educating themselves about lupus can also help a person feel better understood, but people do not need comprehensive knowledge of the condition to be able to help.
Offering emotional support or practical assistance can be valuable. For caregivers, it may help to create a care plan that lists a person’s daily needs and how to address them.