Somebody close to you has recently been diagnosed with SLE, a chronic illness where the immune system attacks healthy tissues.
Finally, they have found the reason behind all the symptoms they’ve been experiencing. They now know that it’s not just in their head and can start looking for ways to manage the disease.
As a friend or family, you want to help them even in their simple day-to-day lives.
Below are some of the things that would be good for you to understand to better care for someone with SLE.
1. They may not look like it, but they have a chronic illness
Lupus is an invisible illness. This means that they may look great physically, but they really are dealing with a chronic disease and all the related symptoms.
You might not be noticing anything wrong because you don’t see them when they’re in pain. They might also be trying to look fine in front of people, even if they are not feeling good at the time.
Giving comments like, “you don’t really look sick” or “you look fine” might not help. Moreover, doubting that they are not feeling well just because they look great physically can be really difficult for patients to deal with.
2. SLE can make patients be really tired
One of the most common symptoms of SLE is extreme fatigue. There are times when they just can’t get themselves out of bed and are sleeping the whole time. Understand that they are not being lazy or trying to avoid chores. It’s just that they can feel very tired most of the time.
In many cases, the patient had been really active in the past, and seeing them sleeping a lot is something unusual. Keep in mind that SLE can cause a lot of changes and having family and friends who understand this could really help.
3. Flares can be difficult to predict
They may be feeling great one day and then the next day they’re canceling on your much awaited trip. This is because flares can occur anytime. Accepting that things may not go as planned and preparing contingencies might lessen the stress and allow you to enjoy activities even if they’re not what you originally had in mind.
4. Lupus fog and other cognitive issues
Your calendar says you were supposed to meet that day but then they missed it. Or you followed up on a text message and they said they forgot to reply. They may also be times when they don’t understand what you’re saying.
This is because SLE also affects patients’ memory and brain fog is a very common symptom. They can be forgetful from time to time and there can be moments when you need to speak a little slowly or repeat what you were saying a few times.
5. Read as much as you can
Learn everything you can about SLE, its symptoms, possible complications, and available treatments. Reading patients’ posts on community forums like the Life with Lupus support community can provide a clear picture of what patients are going through. This can then help you relate and communicate with them better.
Having a chronic autoimmune disease like SLE is undoubtedly very challenging. Aside from all the symptoms patients have to bear, finding the right doctor, trying different treatments, and dealing with the lifestyle changes can all contribute to the disease burden.
Friends, caregivers and family members can play a big role in improving the patient’s quality of life. Having a deeper understanding of SLE is key in its accomplishment.
Ben’s Friends is a network of safe and supportive online communities for individuals affected by a rare disease or chronic condition. Our Life with Lupus Community aims to provide online support to people affected by lupus. If you think you would benefit from our community, we invite you to sign up here.