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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 July 10, 2020

How to Reinvent Yourself and Change Your Life

How to Reinvent Yourself and Change Your Life

There will always be times in your life when you may need to learn how to reinvent yourself. This could come when you experience a big change, such as leaving your job, moving on from a relationship, transferring to a new home, or losing a loved one. If you are going through a major shift in your life, you may have to find new ways of thinking or doing things, or risk failing to reach your full potential.

“When something bad happens, you have three choices. You can let it define you, let it destroy you, or you can let it strengthen you.”

Many people who dared to leave their old unhappy lives enabled themselves to pursue their passions and find a renewed zest for living. You can also achieve the same if you take a leap of faith and make things happen for yourself.

To help you always be at your best wherever you may be in your life, here are some practical tips on how to reinvent yourself.

The Reinvention Checklist

Before embarking on a journey of self-reinvention, you need to make sure that you have everything that you need to make the trip bump-proof. These things include:

Resilience

Problems and obstacles are guaranteed to happen. Some of them will be difficult and may knock you off course; the important thing, however, is that you learn from these difficulties, never lose focus, and always get back up. This requires building resilience to get through the tough times.

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Support

Humans are social beings. Although it is important that you learn to rely on yourself when facing any challenge, it is also important to have a support team that you can lean on to give you a boost when things get too tough and to correct you when you’re making mistakes.

The key is to find the right balance between independence and dependence. Don’t be afraid to be vulnerable and share the difficulties you’re facing. When you open up, you’ll find the people who are really going to be there for you.

Self-Care

During the process of learning how to reinvent yourself, you will have to pull yourself away from your old comfort zones, habits, roles, and self-perceptions. This can be difficult and cause you to question your self-worth, so it’s important to engage in self-care to maintain a positive outlook and keep your mind and body healthy as you face the challenges that await you. Self-care can include:

  • Participating in a hobby you enjoy
  • Spending time with your support system
  • Taking some time to walk in nature
  • Practicing loving-kindness meditation

Find what works for you and what helps you feel like your true self as you seek a reinvented version of you.

How to Reinvent Yourself

Once you’re sure that you’re equipped with all the tools in the self-reinvention checklist, you can begin your journey of learning how to reinvent yourself.

1. Discover Your Strengths

This step provides valuable information on how you deal with certain situations. If you have this information, you will be able to manage difficulties more efficiently.

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To find out what your strengths are, you can ask your friends and colleagues for feedback, engage in self-reflection, or try these 10 Ways to Find Your Own Personal Strengths.

2. Plan

This step calls for a thorough assessment of your current emotional, psychological, and financial status so that you can develop plans that are realistic and practical.

It’s okay to have ambitious dreams, but your plans have to be realistic. Making use of SMART goals can help you plan your life better.

You can also consult your mentor or life coach for practical tips and advice.

Ultimately, you’ll want to create specific long-term and short-term goals that you can create milestones for. By doing this, you’ll lay out a specific roadmap to your reinvented self.

3. Try Things Out

Sometimes, we don’t know if solutions actually work until we try them out. This is why it is important to experiment whenever possible, especially if you’re dealing with a career change. You may need to simply experiment in order to find the things you like. This can be the same with hobbies. If you’re not sure what you would like doing, accept invitations from friends to join them in their favorite sport or take a class, like pottery or photography.

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By seeing what’s out there in any area of your life, you’ll have a better chance of finding the things you enjoy and the goals you want to create.

4. Manage Your Finances Well

Changes may require a bit of money. If you’re shifting to a new career, you may have to pay for training. If you’re going through a tough divorce or having a hard time dealing with the death of a loved one, you may have to pay for therapy. If you’re moving to a new home, you’ll definitely have to pay a whole lot of expenses.

All of these things are possible, but it will require a bit of money savviness as you learn how to reinvent yourself. If you have that cushion, you’ll feel more comfortable straying from your current path to try new things.

5. Muster Your Courage

Fears and self-doubt may arise when you encounter difficulties and setbacks. Sometimes, they may also come when you’re taking risks. You have to manage these negative emotions well and not allow them to discourage you. Tap into your courage and try doing at least one new thing each week to develop it.

Learn how to deal with your self-doubts to move forward in this article: How Self Doubt Keeps You Stuck (And How to Overcome It)

6. Use Your Support Group

As stated above, you need to build a strong support group before you even start the process of reinventing yourself. Your group will keep you from taking wrong turns and encourage you when you get too weighed down by problems. Don’t be afraid to call them, or even ask them out for coffee if you need to vent about the current difficulties you’re facing.

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7. Remind Yourself Every Day of Your Commitment

Write your goals on different-sized cards and scatter them at home and at work in places where you can easily see them. This way, you will constantly be reminded of where you want to be. Remember, writing down your goals helps them stick[1].

8. Accept Failure, Learn, and Resume Your Journey

Failing is normal, especially when we’re trying out something new. When you fail, simply recognize it, learn from it, and move on. Failure, in the end, is the best way to learn what does and doesn’t work, and you simply won’t be able to learn how to reinvent yourself if you don’t accept the inevitable failures that await you.

Final Thoughts

If you truly want to learn how to reinvent yourself and live the life you desire, take the advice above and start taking action. It will take time, patience, and plenty of effort to make the change you want happen, but it will be all worth it.

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Featured photo credit: Ashley Rich via unsplash.com

Reference

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