Dealing with any kind of chronic illness can be difficult, not only on the patient but also on their caregivers and family members. With an illness like Lupus it can be particularly frustrating. Most diseases have identifiable symptoms, the symptoms are usually the same in most patients, and they follow predictable patterns. Not so with Lupus. In order to be supportive to a person with Lupus it is important to understand the disease and its symptoms.
What are the most common signs and symptoms of Lupus?
Even though the symptoms are not always the same in all patients, the most common signs and symptoms of Lupus are:
- Fatigue and fever.
- Joint pain, stiffness and swelling.
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose.
- Skin lesions that appear or worsen with sun exposure (photosensitivity)
- Hair Loss
- Dry mouth, dry eyes
- Pulmonary Issues
- Kidney inflammation
- Gastrointestinal problems
- Thyroid problems
If a loved one has Lupus, their illness will affect you as well. Often pain, depression, or fatigue will cause last minute changes in plans. It is not always easy to understand the symptoms or to determine just what to do to be supportive of someone with Lupus. An article on WebMD offers these suggestions.
Seven ways to be supportive of a patient with Lupus:
- Talk openly about Lupus and its impact – Even though most people are hesitant to talk about chronic illnesses because they are afraid to say the wrong thing, not discussing them can be equally as destructive. It’s important to keep the lines of communication open and honest.
- Understand Lupus the illness – Take the time to learn about the illness and the symptoms independently. There is a wealth of information and reliable sources online that will explain the disease and its symptoms.
- Accept changes due to Lupus – Chronic pain, fatigue, and changes in physical appearances can impact relationships and the role of individuals in families. Being able to accept that these changes will occur and having back-up plans can help transitions to move smoothly.
- Ask what your loved one with Lupus needs – If you are not sure what the patient needs or wants just ask. Keep in mind that needs vary from day to day or even hour to hour. Make a genuine offer to be of assistance, offer what you are able and prepared to do, and be sure to follow through.
- Offer a gentle nudge when needed – But be careful not to nag or be judgmental. An outing or fun activity can be uplifting but be mindful of what the person is capable of.
- Get support for yourself – There are support groups for caretakers and family members. If you find that you are becoming overwhelmed, seek out a support group either in person or online.
- Take a break from Lupus – Don’t feel guilty if you begin to feel overwhelmed when caring for a person with Lupus. Remember it is important to take care of yourself first before taking care of someone else.
Because Lupus sufferers can appear symptom-free for weeks or even months, it is difficult to understand what is happening when they begin to complain of fatigue, or debilitating pain, or loss of mental focus. Please remember that the one thing NOT to do is to say to someone with Lupus: “You don’t look sick.”
A great way to support someone close to you who has Lupus is by showing your support with the things you wear, starting a dialogue with others about Lupus, and helping support organizations who try to find cures for Lupus, like The Lupus Foundation of America. A Lupus support bracelet or piece of jewelry is a perfect example. You can find a variety of bracelets, earrings, and more in our Purple Collection. Each piece features purple elements, which is the color of support for Lupus. They are great conversation starters and 10% of the profits from each piece go to The Lupus Foundation of America.