I’m feeling a bit frustrated these days. It seems nobody understands or knows how to deal with someone that has a chronic illness. I’ll apologize ahead of time for my rant. It’s just unbelievable the things I’ve heard over the years. I should just stop complaining and explaining!
Things a Lupie would rather not hear:
- “You don’t look sick!” Lupus is labeled as one of the “invisible illnesses”, most symptoms are not obvious. (See previous blog post.) No you don’t understand what it feels like to have lupus, unless you’ve lived in my body. I have good days and bad days BUT my good day is equivalent to your sick day.
- “It can’t be that bad!” Fatigue, joint pain, skin rashes, muscle pain, sun sensitivity, fevers and headaches. Also, it can cause inflammation of the body’s organs like heart, kidneys and lungs.
- “Push through it.” Actually I do push through it most of the time. Some days getting out of bed is a challenge.
- “It’s not that bad, it’s just a rash.” That rash is itchy, burning and painful at times. When obvious to others it’s embarrassing. People think it’s contagious and treat you like a leper.
- “I understand because I hurt/twisted my ankle.” Your sore ankle you hurt playing basketball is not the same. Your pain will heal and go away. It’s not about you! Don’t complain because I complain. It’s not a competition.
- “You’re lazy. You should go to work.” It’s difficult to hold a job when your joints are swollen and painful, have unexpected fevers and constant fatigue. At best, my symptoms are unpredictable.
- “Just snap out of it.” Ha… Would if I could!
- “Wear sunscreen. You can still go out in the sun.” The flare produced by sun exposure is not worth an afternoon of sunshine. Fever, fatigue and joint pain with swelling are just few symptoms after sun exposure. The best option is avoiding the sun.
- “You need to stay active so you’re joints won’t hurt.” Yes moving does help the joints to stay lubricated. However when the joint is inflamed, it feels like it’s on fire, burning inflammatory pain.
- “Stop taking those medications. They’re making you sick.” Treatment side effects often outweigh the symptoms of the illness. Sometimes I trade the symptoms of lupus for the side effects of the prescription medication.
- “My friend had it and was cured with diet and vitamins.” If a particular diet or supplement could cure my illness, I would gladly give up meat, dairy and gluten. I would take the vitamin B, L lysine, manganese and eat the turmeric, ginger and lemons. By the way, I’ve tried every suggestion without avail. Besides, there wouldn’t be a million and a half people suffering from this disease.
- “Go exercise.” It’s not that easy when you feel like the tin man walking and you’re in pain.
- “Lupus is your problem.” It doesn’t just affect me. Yes, I live with chronic pain and fatigue. Yes, I am sensitive to sunlight. Yes, I deal with the impact of this illness on a daily basis. But, so does my family and those that love me. Over the past few years, my family and friends have witnessed me battle this illness. It has affected my mood, my ability to join in on activities I once enjoyed and with the heart incident, their sense of security that mom will always be there for them.
After dealing with this illness for 30 years, try to understand that I have educated professionals caring for my health. I keep current in research and all possible “cures”. I research all treatment options extensively before making choices regarding my healthcare. I did not choose this illness nor is it from something I have done wrong or poor life choices. My health and wellbeing is just as important to me as it is for everyone else.