What Not To Ask A Person With A Chronic Illness
Lupus is a disease that is hard to understand. Especially because the symptoms come and go. One day my daughter can look and feel fine, the next day she can struggle just to even get out of bed. To some, even those close to her, it can seem suspicious and may lead them to question her health and her illness. Is it real or is it fake?
Be mindful when talking to people with lupus
This can be very hard and frustrating for all who are involved. As a caretaker of someone who struggles with lupus, this can be heartbreaking to see happen to someone you love. If you have a friend or family member living with lupus, or any chronic conditions for that matter, there are some things that should not be said. Here are some things to be mindful of when talking to others who have a chronic disease like lupus:
“But you don’t look sick!”
As a caretaker, I have heard this said to my daughter at least a few times. Yes, it is true she may not look sick. However, regardless of how she looks, she still is sick and does not feel good. If someone is chronically ill, try not to just look at their appearance, but instead dig a little deeper and ask how they are really feeling. Appearance can be misleading and definitely doesn’t always tell the whole truth of what is going on internally for that person.
“Have you tried going gluten-free, dairy-free, or vegan?”
This doesn’t seem like a very common question to ask, however, my daughter has been asked this on many occasions. Sometimes a diet change can help certain illnesses, however, lupus is different for everyone and a change in diet may not be the magic cure. Some people who struggle with lupus will find that cutting out a certain food, or food group, can be helpful. One-size fits all diets don’t typically work though because of how different lupus is for each individual. The bottom line is that a change in diet can definitely make a small difference for the better, but in the end, it won’t make lupus disappear.
“Just take a nap, it’s impossible to be that tired.”
With lupus, a nap can help a bit, but regardless of how many naps my daughter takes, she is still tired most of the time. Living with lupus, and many other chronic illnesses are exhausting. Many days my daughter struggles to even get around the house. I have learned as I have taken care of her that I have no idea how she actually feels, only she does. But I have seen this disease make her very sick and that’s how I know that small things only make a small difference. There is a big difference between being tired from typical day to day activities and the fatigue caused by a chronic illness.
“You are still sick?”
Due to the fact that lupus is a chronic condition, it will never go away. There are ways to make it more liveable, but no cure. It is not something that will go away overnight. My daughter and our family have come to accept the fact that she will live with lupus for the rest of her life.
“Have you tried supplements or essential oils?”
This is a common question my daughter gets. She has tried many supplements and uses essential oils daily, and they do help, but they aren’t the answer to her condition. Some of the things suggested may help short-term and help to alleviate symptoms, but in the long run, essential oils, supplements, and even special drinks will never cure her lupus.
Don't judge a book by its cover
My daughter and I totally understand that for the most part people just want to help. We are grateful for the advice and any new ideas and opportunities. As a general rule, try to think about the other person’s feelings and place yourself in their shoes. Until you have walked in someone’s shoes who has lupus or a chronic disease, you will never truly understand. Remember you can not judge a book by its cover.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?