Posted On: March 30, 2017
In medical terms; Lupus is a chronic disease where our immunity system gets overactive and attacks the body own healthy cells. It can affect multiple organs of our body! Most of the people living with Lupus experience joint pain, high fever, photo sensitivity, hair loss, consistent fatigue and skin rashes. The other common yet worrisome Systemic Lupus Erythematosus symptoms are kidney problems, heart problems. The nature of Lupus symptoms is unpredictable. Thus, making critical it to manage and live with.
In America, more than 1.5 million people are diagnosed with Systemic Lupus Erythematosus. But, there isn’t enough Lupus Awareness and evidence to give a concrete figure of Lupus affected Indians. A decade back, hardly anyone has heard of Lupus or S.L.E but the present scenario is changing. However, we still need to work on.
It affects women 9 times more than men. Things like kidney problem, hair fall, photo-sensitivity, heart problems are pretty common. Again, some people don’t even show a sign or symptom of Lupus until it is in the later stage. Since Lupus is an internal disorder with an unpredictable nature, things get really tough for one living with it.
Living with Lupus has always been a tough job. Ideally, they should be doing exercises, eating healthy, keeping themselves stress-free. But how much a person would be in pain and discomfort to not to able their basic chores like eating a meal. People fail to understand that just because it doesn’t show outside, doesn’t mean it is not painful.
People living with Lupus do wish to live a normal life, but it is hard to achieve. The presence of a family, friend, partner or a caregiver is important and motivating. Therefore, if you know anyone living with lupus, please don’t judge him or her by her appearance. Support as you expect to be supported during your hard times.
Here are a few things that you should not say to your warrior friend:
1. "YOU DON'T LOOK THAT BAD."
Do I need to bleed furiously to look sick to you? Not everyone has visible signs of lupus unless it’s major. In fact, one can look in perfect health but it is not true. Don’t judge anyone how he/she looks from outside. It is the inside of that person fighting lupus. If anyone tells you like he or she is feeling bad, trust that person.
2. "WHY DON'T YOU DO SOME EXERCISE? YOU HAVE GAINED SO MUCH WEIGHT."
Okay! You have hit the sensitive nerve now. No one is taking steroids willingly, they are taking it to control down Lupus. Unfortunately, it is the common lupus treatment that doctors prescribe. Moreover, asking to work out in the middle of a lupus-flare is the most horrible thing you can ever tell to anyone. Sometimes, it is really impossible – so stop being so pushy and show some respect.
3. "WHY DIDN'T YOU TAKE COD LIVER OIL? IT HELPED MY FRIEND'S GRANDMA IN HER ARTHRITIS."
Am so sorry, that I haven’t tried your full-proof remedies yet. It may help to alleviate a couple of symptoms, but they aren’t going to heal Lupus. Just because it helped your friend’s grandma, there is no surety that would work on me. Anyways, thanks for that piece of advice.
4. "WHY DON'T YOU STAY ON GLUTEN FREE DIET?"
Question! Are you a dietitian? Do you know about lupus? How could you be so sure that a gluten free diet will work for where the doctors recommend a balanced diet. Cutting out items out of my diet isn’t going to help. Trust me.
5. "HOW COULD YOU HAVE ALL THESE PROBLEMS AT SUCH A SMALL AGE?"
That’s crazy! I wish if it was so. I still do wish if Lupus cared about the age factor before ruining one’s life. Whatever it is, you still don’t need to rub some salt on a lupus warrior’s open wounds.
6. "WOW! YOU HAVE SUCH A LUXURIOUS LIFE. NO OFFICE TO RUN TO - NEED NOT TAKE CARE OF THE HOME. YOU CAN SLEEP AS MUCH AS YOU LIKE."
Neither I nor anyone else wishes to be in bed whole day – every day. If we are unable to work, means we are losing on our income. Every lupus patients have a huge medical bill to take care of, which includes medications, visits to the doctors, specialists, hospital stays bills, tests and so on. No one can relax with such a huge bill on the head. Honestly, there is no luxury or fun in this life with lupus where you are actually helpless.
7. "YOU SHOULD TRY HARDER - YOU NEED TO PUSH YOURSELF MORE."
It is okay to push oneself if the LUPUS IS UNDER REMISSION. But do you know if it is under remission before suggesting someone to push herself? We will suggest you push a bit more next time when you are in the bed with high fever and aching joints. It will help us to learn to run against the odds. Living with lupus isn’t that easy as you think.
8. "I DO A FULL-TIME JOB - GOT TWO KIDS. EVEN I GET TIRED - IT'S NOT A BIG DEAL. YOU NEED TO PULL YOURSELF OUT OF THE BED."
Do your job or kids cause your chronic fatigue or even just fatigue? Lupus is a health condition that causes fatigue. Unless you have something like this, you would never know how it feels. You can get over your tiredness after a small nap or hot shower, but in fatigue, you don’t even have the strength to play candy crush or cook yourself an omelet.
Probably you didn’t mean to hurt anyone. Probably you were trying to encourage. But, it hurts – one living with lupus have already lost a lot. You can hardly imagine what is going on inside your friend and by no means, you can put yourself into his/her shoes and feel it. Remember, your friend is forced to live with lupus – and by now has lost all hopes, strength, courage and faith. If you want to help, first respect her enduring agony and tolerance. Therefore, if you want your friend to go for a morning walk, hold her hand and take her along with you. If your partner is unable to get up, why not sharing some of her morning chore load so that she can be a little stress-free and feel better. Moreover, if you seriously want to help, first stop hurting your friend!
FOR ALL THE LUPUS HEROES: How many of these comments did you hear? Any other comment you think is missing or just want to curse someone – don’t hesitate to do so in the discussion section below.