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5 Misconceptions About Your Loved One Fighting Lupus

5 Misconceptions About Your Loved One Fighting Lupus

If you love someone fighting lupus, you very likely know that this disease is an autoimmune disorder. This means that the immune system is out of sync and attacks healthy body tissue.

It just cannot distinguish the threats from the benign elements. The result is usually painful inflammation of the joints. Its official name is Systemic Lupus Erythematosus (SLE). Symptoms range from mild to severe and the disease may manifest itself in joint pain, chronic fatigue, skin rashes, migraines, ulcers and may damage internal organs such as the kidneys and heart.

If you have a loved one struggling with lupus right now, there are a few choice misconceptions that others believe and that you should keep in mind as you support them.

1. They have an easily understood disease

In spite of the fact that 1 in 185 Americans suffer from lupus, the majority of the population is extremely ignorant about this disease. They also think it is contagious, which is completely false and they persist in thinking that only the elderly are affected.

The reality is that the most common age group to be affected is actually in the 15 – 45 range. Only about 10% of lupus sufferers are men, so it is generally a women’s disease. Thanks to Toni Braxton, the reality TV star and award winning singer, who has come out about her daily battle with lupus, there is more public awareness now of what the disease involves.

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Watch the video of Toni here,as she describes some of her daily struggles.

2. They are very lazy

Few people understand any condition which involves chronic fatigue and they just assume that the people are plain lazy and they ought to get on with it. This applies to many diseases such as chronic fatigue syndrome (CFS), and lupus is no exception. Toni Braxton describes it as like having the flu, but every day.

Telling their doctor that they are tired is often very difficult as you can see from the sufferers’ comments here on the Lupus Foundation of America’s Facebook page. The fact that this post was liked by more than 1,000 people speaks volumes.

You can support your loved one better by bearing in mind that they will almost always need more rest than anyone else in the family or circle of friends.

3. They cannot have children

Lots of people mistakenly think that a woman with lupus may have a very risky pregnancy and that the child will be born with some birth defect. This is just a myth though, as the risk of birth defects with a woman with lupus is exactly the same as any normal pregnancy.

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Women with lupus are generally advised to plan their pregnancy when their disease is in remission though. This normally makes things much easier for them.

Lupus sufferers have to be carefully monitored as there are some dangers, but they very often carry a child successfully to term. There is a small chance that the lupus condition can be passed on to the child, but in reality, these risks are minimal.

4. They can be easily diagnosed

Diagnosis is not just simple blood work and many people think that a visit to the doctor can confirm the diagnosis. But it is much more complicated than that. This disease is often called “the great imitator” because its symptoms could be many other diseases.

In addition, there are flare ups which mean that the disease may come and go, and change over time. The doctor, if she suspects lupus, will order a complete set of laboratory tests. Antibody testing, a complete blood count, kidney and liver functions, and blood cells sedimentation rates are usually ordered.

Getting treatment is not that easy either, as the best person to treat it is usually a rheumatologist as that is also a connective tissue disease. This is also why doctors use the American College of Rheumatology guidelines to help them diagnose lupus.

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There are just not enough rheumatologists to go around, which means that the best qualified specialist is often not available.

5. They probably got it from their parents

This is another myth, because the actual genetic factor is quite small, statistically. It is thought that only about 5% of parents will pass on the disease to their offspring. Research so far has failed to identify a gene or group of genes that might be responsible.

The fact that Native Americans, Native Hawaiians, African and Asian ethnic groups are at greater risk certainly suggests a genetic link. There are also environmental issues involved which specialists do not fully understand, as yet.

If you talk to lupus sufferers, you will find that the hardest part for them is trying to make friends and family understand what they are going through. Some of the symptoms are vague and that is part of the problem.

The mental and physical suffering is often brushed under the carpet by the sufferers themselves because they are not getting enough support and sympathy. Talking openly and honestly about this chronic condition is often the best way to help.

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This is a great step toward accepting changes in lifestyle for family members and also helping to meet the patients’ needs.

“I was upfront about having lupus, but it never came up in the show. I didn’t want anyone thinking they had an advantage – there’s a fine line between what you tell and what you don’t.” – Leslie Hunt, season six contestant on ‘American Idol’

Featured photo credit: Fuente: Com Salud/ Com Salud Agencia via flickr.com

More by this author

Robert Locke

Author of Ziger the Tiger Stories, a health enthusiast specializing in relationships, life improvement and mental health.

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Last Updated on February 11, 2021

Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

How often have you said something simple, only to have the person who you said this to misunderstand it or twist the meaning completely around? Nodding your head in affirmative? Then this means that you are being unclear in your communication.

Communication should be simple, right? It’s all about two people or more talking and explaining something to the other. The problem lies in the talking itself, somehow we end up being unclear, and our words, attitude or even the way of talking becomes a barrier in communication, most of the times unknowingly. We give you six common barriers to communication, and how to get past them; for you to actually say what you mean, and or the other person to understand it as well…

The 6 Walls You Need to Break Down to Make Communication Effective

Think about it this way, a simple phrase like “what do you mean” can be said in many different ways and each different way would end up “communicating” something else entirely. Scream it at the other person, and the perception would be anger. Whisper this is someone’s ear and others may take it as if you were plotting something. Say it in another language, and no one gets what you mean at all, if they don’t speak it… This is what we mean when we say that talking or saying something that’s clear in your head, many not mean that you have successfully communicated it across to your intended audience – thus what you say and how, where and why you said it – at times become barriers to communication.[1]

Perceptual Barrier

The moment you say something in a confrontational, sarcastic, angry or emotional tone, you have set up perceptual barriers to communication. The other person or people to whom you are trying to communicate your point get the message that you are disinterested in what you are saying and sort of turn a deaf ear. In effect, you are yelling your point across to person who might as well be deaf![2]

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The problem: When you have a tone that’s not particularly positive, a body language that denotes your own disinterest in the situation and let your own stereotypes and misgivings enter the conversation via the way you talk and gesture, the other person perceives what you saying an entirely different manner than say if you said the same while smiling and catching their gaze.

The solution: Start the conversation on a positive note, and don’t let what you think color your tone, gestures of body language. Maintain eye contact with your audience, and smile openly and wholeheartedly…

Attitudinal Barrier

Some people, if you would excuse the language, are simply badass and in general are unable to form relationships or even a common point of communication with others, due to their habit of thinking to highly or too lowly of them. They basically have an attitude problem – since they hold themselves in high esteem, they are unable to form genuine lines of communication with anyone. The same is true if they think too little of themselves as well.[3]

The problem: If anyone at work, or even in your family, tends to roam around with a superior air – anything they say is likely to be taken by you and the others with a pinch, or even a bag of salt. Simply because whenever they talk, the first thing to come out of it is their condescending attitude. And in case there’s someone with an inferiority complex, their incessant self-pity forms barriers to communication.

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The solution: Use simple words and an encouraging smile to communicate effectively – and stick to constructive criticism, and not criticism because you are a perfectionist. If you see someone doing a good job, let them know, and disregard the thought that you could have done it better. It’s their job so measure them by industry standards and not your own.

Language Barrier

This is perhaps the commonest and the most inadvertent of barriers to communication. Using big words, too much of technical jargon or even using just the wrong language at the incorrect or inopportune time can lead to a loss or misinterpretation of communication. It may have sounded right in your head and to your ears as well, but if sounded gobbledygook to the others, the purpose is lost.

The problem: Say you are trying to explain a process to the newbies and end up using every technical word and industry jargon that you knew – your communication has failed if the newbie understood zilch. You have to, without sounding patronizing, explain things to someone in the simplest language they understand instead of the most complex that you do.

The solution: Simplify things for the other person to understand you, and understand it well. Think about it this way: if you are trying to explain something scientific to a child, you tone it down to their thinking capacity, without “dumbing” anything down in the process.[4]

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Emotional Barrier

Sometimes, we hesitate in opening our mouths, for fear of putting our foot in it! Other times, our emotional state is so fragile that we keep it and our lips zipped tightly together lest we explode. This is the time that our emotions become barriers to communication.[5]

The problem: Say you had a fight at home and are on a slow boil, muttering, in your head, about the injustice of it all. At this time, you have to give someone a dressing down over their work performance. You are likely to transfer at least part of your angst to the conversation then, and talk about unfairness in general, leaving the other person stymied about what you actually meant!

The solution: Remove your emotions and feelings to a personal space, and talk to the other person as you normally would. Treat any phobias or fears that you have and nip them in the bud so that they don’t become a problem. And remember, no one is perfect.

Cultural Barrier

Sometimes, being in an ever-shrinking world means that inadvertently, rules can make cultures clash and cultural clashes can turn into barriers to communication. The idea is to make your point across without hurting anyone’s cultural or religious sentiments.

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The problem: There are so many ways culture clashes can happen during communication and with cultural clashes; it’s not always about ethnicity. A non-smoker may have problems with smokers taking breaks; an older boss may have issues with younger staff using the Internet too much.

The solution: Communicate only what is necessary to get the point across – and eave your personal sentiments or feelings out of it. Try to be accommodative of the other’s viewpoint, and in case you still need to work it out, do it one to one, to avoid making a spectacle of the other person’s beliefs.[6]

Gender Barrier

Finally, it’s about Men from Mars and Women from Venus. Sometimes, men don’t understand women and women don’t get men – and this gender gap throws barriers in communication. Women tend to take conflict to their graves, literally, while men can move on instantly. Women rely on intuition, men on logic – so inherently, gender becomes a big block in successful communication.[7]

The problem: A male boss may inadvertently rub his female subordinates the wrong way with anti-feminism innuendoes, or even have problems with women taking too many family leaves. Similarly, women sometimes let their emotions get the better of them, something a male audience can’t relate to.

The solution: Talk to people like people – don’t think or classify them into genders and then talk accordingly. Don’t make comments or innuendos that are gender biased – you don’t have to come across as an MCP or as a bra-burning feminist either. Keep gender out of it.

And remember, the key to successful communication is simply being open, making eye contact and smiling intermittently. The battle is usually half won when you say what you mean in simple, straightforward words and keep your emotions out of it.

Reference

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