- Even if a lupus patient appears to be okay, that does not mean he or she is feeling okay.
- On certain days, lupus patients just need to take a break and rest.
- Lupus is not a contagious disease, although some people may fear that it is.
“What does it feel like?” is probably the most asked question that people with lupus get. Let’s be honest; it’s definitely not easy to describe to a healthy person what lupus patients are feeling and going through every day. People are often curious about lupus and what it feels like to suffer from the disease, but what people with lupus want you to know is that a person with lupus has several struggles they cannot put completely into words.
Not many people are aware of what lupus really is and how it can affect a person greatly. Hence, this article intends to spread awareness about how to handle the condition, especially if it is the first time that you encounter a lupus patient. You will learn more about them, what happens when they are sick, what they have to say, and how you will have a better understanding of the condition.
Lupus: An Overview of Disease
Lupus or systemic lupus erythematosus (SLE) is an inflammatory disease wherein it occurs when the immune system of the body attacks itself. It can take years to diagnose, depending on the type of lupus that a person has. The inflammation of this condition attacks the healthy organs and tissues; it can harm the skin, kidneys, heart, nervous system, blood cells, and any body part. Some common symptoms of lupus are often mistaken for ordinary illnesses like fever, rashes, fatigue, joint pain, and swelling. The physical and mental effects may implicate differently from other people. Some have mild symptoms while others have severe ones.
The disease happens to anyone and everyone through an unexpected time. According to experts, it is difficult to diagnose lupus; thus, most patients are only diagnosed at a later stage. Also, there is no accurate medication or treatment for lupus.
5 Things that People with Lupus Want You to Know
For a better perspective on the disease, this article offers you the opportunity to understand the disease better by describing the disease in the patient’s perspective. In the succeeding sections, you can read about what most patients have to say about the disease and what they actually feel:
1. The truth behind, 'You don’t look sick at all'
Anyone can look physically normal; they can conceal everything that they don’t want people to see. What people with lupus want you to know is that even if they look okay some days, that doesn’t mean they have been cured and are feeling miraculous. They often think about their condition of being always sick and that’s how it is.
Another depressing part of having a chronic condition like lupus is the difficulty of maintaining a social life. Most of the time, they have to cancel plans with friends because their sickness has started to flare up again.
Since lupus is technically an “invisible disease,” people are misled by it, and often misinterpret the patient. We, as a society, need to understand that lupus patients cannot overlook their health issues. If there is someone who needs to be more sensitive, it would be the healthy people - who must be more considerate towards lupus patients. They already have the disease to deal with; and a lupus patient doesn't need us to add to a mountain of problems and stress.
2. Have patience
Sometimes, there are days when lupus patients feel energized and ready to face the world. But when they have flare ups, they have to deal with the pressure of doing relatively small tasks. People with lupus often worry and wonder about how much energy they will let out just to do a simple task. It is a frustrating thing to experience, because they have to think out their actions thoroughly and precisely.
One of the downsides of lupus is the limited energy that they have to distribute carefully to achieve just one task. When they give out too much, it will greatly affect their health. If you have a friend with lupus, be more understanding when they have to lie down on their bed the whole day. They can’t always be strong and keep up with life. On these days, they have to get a lot of rest.
Understand that you should be more patient with them because even if their organs hurt internally, they also deal with emotional agony due to many issues like the concern of their future or that they aren’t good enough anymore. What people with lupus want you to know is that it is important to support them in every step of the way while still giving them the independence to do things on their own.
3. We are not contagious
Just because lupus is a chronic disease does not mean that it is contagious or like a pathological disease that can spread easily. In fact, it is not contagious at all. Often, people are overreacting when thinking the condition is contagious. Most are curious and afraid if the disease is contagious. Some may be frightened by the sight of the “butterfly rash,” a type of lupus symptom that affects the skin which can stretch through the cheeks and arms like a sunburn. Realistically speaking, it doesn’t spread through people, but it does flare up in their bodies from time to time.
4. Don’t waste your freedom
Healthy people have the gift of privilege to tackle any action without a choice. Unfortunately, it is far too often taken for granted. You are lucky to have no limitations in each movement that you do. Lupus patients, on the other hand, have to be extra cautious of their movements as this can greatly affect their overall health. They have a lot of physical and mental limitations, and every day, they go through the same routine of struggling with simple tasks. What people with lupus wants you to know, is to not waste your freedom and opportunities.
It is a human instinct to give all your attention to those who are sick, which is usually done out of good intentions. But what lupus patients want is to have balance - to care for them, as well as your own self. They do not want to feel guilty that their loved ones missed so much of life because of looking out for them. Before anything else, you have to take care of yourself first so that you can take care of them better.
5. It is a challenge every day, but we never give up
Even though they struggle with being sick, it can be a life-changing path that people with lupus often experience. It is amazing how they can appreciate life more. Furthermore, they can look into the positive side of things instead of the negative. Sure from time to time, it gets a little depressing to face all the struggles every single day, yet they know that sadness is never the answer to them.
What people with lupus want you to know is that they have learned how to love themselves because they listen to their bodies and respond to the needs of it. They are strong and have the willpower to fight this disease every day. Indeed, they are an inspiration regarding how we live our lives and how we learn to value our friend or relative with lupus even more.