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It seems that there are a lot of "lupus lies" floating about the public/media these days. I'm going to take some time to reveal some of the common ones which are extremely annoying. Just imagine you had an imaginary friend who spoke to you, you could see him but no one else could. You could hear him, but no one else did. He'd poke, prod, and pull prank tricks on you, but no one else seemed to see it!
Lupus is kind of like that! It's always there inside you. Sometimes festering up and cause painful symptoms like achy joints or swollen knees. Patients are reminded they have this illness every single day and it's about time those of you who don't have lupus took some time to hear us out! School is in session and today's lesson is all about revealing those "lupus lies"!
Lupus Lie #1: "Tiffany never comes to any of our parties anymore! She's always saying she doesn't have the energy or that she has too much pain, but she doesn't even look sick she's just lazy!"
Truth: Looking good and Feeling good are two entirely different things! You can't tell who has a disease just by looking at them! Not all disabilities are visible. Some of the symptoms caused by lupus are joint pain and extreme fatigue. Instead of judging a friend or family member try asking them how they feel first, and take initiative by going online and finding out how their diagnosed illness affects the human body! You'll be surprised at how strong they are once you read more about their illness!
Lupus Lie #2: "It's not lupus, it's NEVER lupus! Duh, Don't you watch House!
Truth: Dr. Gregory House is WRONG! There are over 1.5 million Americans and over 5 million people worldwide living with lupus. 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.
Lupus Lie #3: "Lupus? That's a Womens disease! Only females get that!"
Truth: WRONG! 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.
Lupus Lie #4: "Exercising is harmful for a lupus patient!"
Truth: WRONG! Exercise is one of the only ways for lupus patients to fight fatigue. You don't have to do anything crazy like run a marathon! Mild to moderate exercise is best; try walking and stretching and set a small goal. Try stretching until you're able to walk. Walk in little circles around your room until you feel strong enough to walk a block outside. It's a proven fact that light exercise can ease joint and muscle stiffness.
Lupus Lie #5: "I'm dark-skinned so I don't need to wear sunblock." or "It's not even sunny out!"
Truth: WRONG! Everyone needs to wear SUNBLOCK with a spf higher than 70 & high uva/uvb protection levels. Even if you don't get sunburned the sun STILL damages skin cells if you're not protected! Regardless of skin color, age, race, ALL lupus patients need to wear sunblock as well as wearing a wide brimmed hat and protective clothing. The sun is the reason many of us have lupus flares & increased fatigue! Protect yourselves!
Lupus Lie #6: "I don't have a positive ANA, so that means I don't have lupus!"
Truth: WRONG! You don't need to have a positive ANA to be diagnosed with lupus. The ANA test is not entirely accurate and sometimes patients receive false negatives/positives. Remember that there is 11 diagnostic criteria and you only need 4 out of 11 to be diagnosed.
Lupus Lie #7: "I feel much better so I stopped taking my medications." or "My medications make me sick so I stopped taking them!"
Truth: Absolutely NOT! Medication is part of our treatment plan. Since there is no cure it is very important for each patient to stay on their treatment plan and discuss complications with their doctor. If you medication is making you feel unwell discuss it with your doctor so they can try switching medications. If you are feeling well also discuss this with your doctor so they can try tapering your dosage down to see how your body handles it. You should NOT stop taking you medications for any reason unless instructed by your physician first!
Lupus Lie #7: "I don't visit my friend anymore because she has lupus and I don't want to catch it"!
Truth: Lupus does NOT have a cure, but it also is NOT contagious! It is an autoimmune disease in which the immune system becomes over-active and can no longer distinguish between a healthy cell and a virus invader and so when it sends out auto-antibodies which attack the bodies own healthy tissues.
Lupus Lie #8: "I'll never have a baby because I have lupus!"
Truth: Not true. Lupus patients can still become pregnant and experience childbirth. Lupus can make it difficult for patients and miscarriages can happen often which is why you need to discuss pregnancy planning with your doctor first so they can make sure you are not on any medications that can affect fertility or the fetus. As well as having a team of doctors to make sure you have everything you need.
Lupus Lie #9: "I am stuck because I have a cold and non-supportive doctor!
Truth: WRONG! NEVER stay with a doctor who you feel is not helping you. They are PAID to help you and give you the best care possible! So if you feel like yours isn't doing their job properly here's what you do; request a copy of your medical records and find a new one! Try calling your local lupus chapter for doctor referrals! We don't have the luxury of waiting til a doctor helps. We need to become pro-active with our health and take initiative to get the best care possible, because if we don't stand up for ourselves then who will?
Lupus Lie #10: "I'm destined to be alone all my life because of lupus!"
Truth: Absolutely NOT! Lupus does NOT define who you are. You may have lupus but it most definitely does NOT have you! It takes a special caring person to love someone like us. Don't settle, and don't go looking for love let it come find you. Start small with making new friendships, join a support group so you can form friendships with others who know exactly what you're going through. Most importantly love YOURSELF first. It may be hard to accept that you are living with an illness but remember it's not your fault that you have lupus. Accept it and learn to go from lupus to living, because as my favorite drag queen says, "If you can't love yourself how in the heck can you love somebody else! Can I get an Amen!?"
Always loving you,
Tiffany Marie xoxo
Lies and Misconceptions. The truth, as we know, sets us free. Coming across a blog post that hits home because it’s so real and relevant is a wonderful experience. In our health communities we dedicate a lot of time to being honest and forthright with our health information and patient stories – well today we’re not going to do that. Put on your deviant pants – today we’re going to write lies.
Today, let’s make lists (I won’t say the “p” word) that are 5-10 lines long – each line being a lie or misconception about your health condition. You can use lies or misconceptions you’ve heard before or make ones up. Use your personal experience or get elaborate with fiction.When writing your lies – get creative. Try to find the most interesting way to put these lies or misconceptions into words. Use rich or ridiculous imagery (tap into your 5 senses!) and the best adjectives you can to bring the lies and misconceptions to life. Want to make your lies into a conversation? Try writing your lies in someone else’s voice. If you want to keep your blog honest, you can also switch off between misconceptions and the truth if you want. Line 1: Myth Line: 2 Reality.
How do you normally address misconceptions in your blog or community? How do they play into your role of Health Activist?
What did it feel like to write blatant lies and un-truths? What did this exercise teach you?
THANK YOU for this!