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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

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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 May 21, 2019

How to Communicate Effectively in Any Relationship

How to Communicate Effectively in Any Relationship

For all our social media bravado, we live in a society where communication is seen less as an art, and more as a perfunctory exercise. We spend so much time with people, yet we struggle with how to meaningfully communicate.

If you believe you have mastered effective communication, scan the list below and see whether you can see yourself in any of the examples:

Example 1

You are uncomfortable with a person’s actions or comments, and rather than telling the individual immediately, you sidestep the issue and attempt to move on as though the offending behavior or comment never happened.

You move on with the relationship and develop a pattern of not addressing challenging situations. Before long, the person with whom you are in relationship will say or do something that pushes you over the top and predictably, you explode or withdraw completely from the relationship.

In this example, hard-to-speak truths become never- expressed truths that turn into resentment and anger.

Example 2

You communicate from the head and without emotion. While what you communicate makes perfect sense to you, it comes across as cold because it lacks emotion.

People do not understand what motivates you to say what you say, and without sharing your feelings and emotions, others experience you as rude, cold or aggressive.

You will know this is a problem if people shy away from you, ignore your contributions in meetings or tell you your words hurt. You can also know you struggle in this area if you find yourself constantly apologizing for things you have said.

Example 3

You have an issue with one person, but you communicate your problem to an entirely different person.

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The person in whom you confide lacks the authority to resolve the matter troubling you, and while you have vented and expressed frustration, the underlying challenge is unresolved.

Example 4

You grew up in a family with destructive communication habits and those habits play out in your current relationships.

Because you have never stopped to ask why you communicate the way you do and whether your communication style still works, you may lack understanding of how your words impact others and how to implement positive change.

If you find yourself in any of the situations described above, this article is for you.

Communication can build or decimate worlds and it is important we get it right. Regardless of your professional aspirations or personal goals, you can improve your communication skills if you:

  • Understand your own communication style
  • Tailor your style depending on the needs of the audience
  • Communicate with precision and care
  • Be mindful of your delivery, timing and messenger

1. Understand Your Communication Style

To communicate effectively, you must understand the communication legacy passed down from our parents, grandparents or caregivers. Each of us grew up with spoken and unspoken rules about communication.

In some families, direct communication is practiced and honored. In other families, family members are encouraged to shy away from difficult conversations. Some families appreciate open and frank dialogue and others do not. Other families practice silence about substantive matters, that is, they seldom or rarely broach difficult conversations at all.

Before you can appreciate the nuance required in communication, it helps to know the familial patterns you grew up with.

2. Learn Others Communication Styles

Communicating effectively requires you to take a step back, assess the intended recipient of your communication and think through how the individual prefers to be communicated with. Once you know this, you can tailor your message in a way that increases the likelihood of being heard. This also prevents you from assuming the way you communicate with one group is appropriate or right for all groups or people.

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If you are unsure how to determine the styles of the groups or persons with whom you are interacting, you can always ask them:

“How do you prefer to receive information?”

This approach requires listening, both to what the individuals say as well as what is unspoken. Virgin Group CEO Richard Branson noted that the best communicators are also great listeners.

To communicate effectively from relationship to relationship and situation to situation, you must understand the communication needs of others.

3. Exercise Precision and Care

A recent engagement underscored for me the importance of exercising care when communicating.

On a recent trip to Ohio, I decided to meet up with an old friend to go for a walk. As we strolled through the soccer park, my friend gently announced that he had something to talk about, he was upset with me. His introduction to the problem allowed me to mentally shift gears and prepare for the conversation.

Shortly after introducing the shift in conversation, my friend asked me why I didn’t invite him to the launch party for my business. He lives in Ohio and I live in the D.C. area.

I explained that the event snuck up on me, and I only started planning the invite list three weeks before the event. Due to the last-minute nature of the gathering, I opted to invite people in the DMV area versus my friends from outside the area – I didn’t want to be disrespectful by asking them to travel on such short notice.

I also noted that I didn’t want to be disappointed if he and others declined to come to the event. So I played it safe in terms of inviting people who were local.

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In the moment, I felt the conversation went very well. I also checked in with my friend a few days after our walk, affirmed my appreciation for his willingness to communicate his upset and our ability to work through it.

The way this conversation unfolded exemplified effective communication. My friend approached me with grace and vulnerability. He approached me with a level of curiosity that didn’t put me on my heels — I was able to really listen to what he was saying, apologize for how my decision impacted him and vow that going forward, I would always ask rather than making decisions for him and others.

Our relationship is intact, and I now have information that will help me become a better friend to him and others.

4. Be Mindful of Delivery, Timing and Messenger

Communicating effectively also requires thinking through the delivery of the message one intends to communicate as well as the appropriate time for the discussion.

In an Entrepreneur.com column, VIP Contributor Deep Patel, noted that persons interested in communicating well need to master the art of timing. Patel noted,[1]

“Great comedians, like all great communicators, are able to feel out their audience to determine when to move on to a new topic or when to reiterate an idea.”

Communicating effectively also requires thoughtfulness about the messenger. A person prone to dramatic, angry outbursts should never be called upon to deliver constructive feedback, especially to people whom they do not know. The immediate aftermath of a mass shooting is not the ideal time to talk about the importance of the Second Amendment rights.

Like everyone else, I must work to ensure my communication is layered with precision and care.

It requires precision because words must be carefully tailored to the person with whom you are speaking.

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It requires intentionality because before one communicates, one should think about the audience and what the audience needs in order to hear your message the way you intended it to be communicated.

It requires active listening which is about hearing verbal and nonverbal messages.

Even though we may be right in what we say, how we say it could derail the impact of the message and the other parties’ ability to hear the message.

Communicating with care is also about saying things that the people in our life need to hear and doing so with love.

The Bottom Line

When I left the meeting with my dear friend, I wondered if I was replicating or modeling this level of openness and transparency in the rest of my relationships.

I was intrigued and appreciative. He’d clearly thought about what he wanted to say to me, picked the appropriate time to share his feedback and then delivered it with care. He hit the ball out of the park and I’m hopeful we all do the same.

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Featured photo credit: Kenan Buhic via unsplash.com

Reference

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