Do you have Lupus or an autoimmune disease, and people say the most inappropriate comments to you about your illness? It happens to me all the time. I am not sure if it’s just the lack of knowledge about your illness and what your going through, or maybe just innocently not knowing any better. Just in case you don’t kn0w what to say, here is what NOT to say….
2.”Whose handicapped? & Why do you have those tags?” I don’t know if it is just me, but I would never just ask someone “Hey, why are you in a wheelchair?” or “What’s up with that cane?” Just because you can not physically see a disability does not mean that person does not have a disability. I get asked this question all the time, and even followed out to my car with a head shake of disapproval. Did you know that 73% of people with a severe disability do not use a device such as a cane, walker, wheelchair or crutches? Yes, that is correct. I think people have this false belief that if you are not using some sort of medical device or have a severe physical/ visual disability, then your not considered disabled. That couldn’t be further from the truth. You can not physically see the pain that someone is experiencing inside their body. You can not feel the fatigue, exhaustion, or weakness someone may feel just walking from the car into the store, not counting once inside the store that person’s struggles continues. Parking up front is not a privilege, it’s pain.
3. “Why are you not getting any better?” or “Are you feeling better yet?” Autoimmune diseases such as Lupus, doesn’t get better or just go away. It is incurable. Meaning there is no cure, and it lasts a life time. Sorry, but that is the truth. The truth that took me 2 years to come to grips with myself. Yes, medications can help manage the disease, but not cure it. We all hope to go into remission, but for most of us that is not a reality. We struggle everyday and it never stops. Why am I not getting better? I have no idea why, but when you find out, please let me know, because I’m wondering the same thing. You don’t have to point it out as though I’m a disappointment. Instead of saying “Are you feeling better yet?” Just say “How are you doing today?” ” Is there anything I can do to make things better”. That would be nice to hear for a change.
4. “You need to force yourself outside, get some exercise” Force, I have a problems with force. Actually with Lupus and autoimmune diseases you want to do the complete opposite. You do not want to force your body to do anything. This can result in a hospital stay or a major flare up. I know with Lupus I’m exhausted everyday and require more rest than an average person. With my Myasthenia Gravis, being worn out or over doing it, means exacerbation, which leads to breathing problems, droopy eyelids, blurred vision, unable to walk due to muscle weakness. So no thank you, I will not force myself into a flare or worse, into the ER today.
5. ” You need to be more positive” I really dislike this statement. I am probably the most positive person out there when it comes to my illness, or what my family is suffering through. Being positive is not going to fix anything. I am very honest and blunt about it. I am not trying to be negative, I am just being realistic. I’m always thinking positive thoughts. I try to look at the brighter things in life, but being positive 24/7 about what you are going through everyday can be exhausting and draining. Sometimes you come to the point in your life where this is it, and there is nothing wrong with being realistic about what you are going through. You only can fake being okay for so long. It’s okay to be honest with yourself and think “This sucks”. We are only human and for someone to suggest that you should be more positive or say “it could be worse” is condescending and demeaning. It makes you feel like your not trying hard enough or that you are being ungrateful, which makes you feel guilty for being sick.
6. “Your lucky that you don’t have to work” or “I wish I can stay home all day”. Do you think if I were healthy I would be staying home all day? No, I would not. I actually started having major panic attacks and suffer from anxiety especially when I first resigned from my job, which I loved. I worked ever since I was 16 years old and not having to work for the first time in my life was hard to adjust to. I hate laying in my bed sick, while my husband works 16 hour days without days off weeks at a time, just to pay our bills, which are mostly medical bills. My kids sometimes have to miss out on school activities, or functions, and I can’t always commit so volunteering for anything goes out the window. Sometimes housework piles up, or its frozen meals for dinner because I’m too sick to get up and cook. My daughters sometimes have to pick up my slack and I can’t help but to feel guilty because I can not always contribute, That is very unlucky.
7. ” Have you tried this..or have you taken that…” I am open to try anything at this point, but I am not going to try some gimmicky potion thinking it will cure me or replace the regiment that I am currently on. I already take herbal supplements, I eat healthy and I do everything I possible can. I have one body, and I don’t want to loose it. So you bet I’ve tried this or that. I’m a firm believer of medications and herbal therapy TOGETHER…as long as it does not interfere with each other, and your Dr. is okay with it. Never try or replace your current therapy without consulting your Dr. first. Let’s just leave the medical advice to the experts please.
8. “You don’t look sick” I know, most of us don’t. If only we can turn ourselves inside out, you may actually see something, right? You can not see our blood work , or our insides being attacked by our own immune system and how much damage it caused. You can not see the stress Lupus caused to my heart or the damage it causes to my kidneys.You may catch me on my good day, where I applied ten pounds of makeup to cover up the lack of sleep, the exhaustion or the amount of pain that I am in. I usually wear long sleeves to cover up my iv scars or bruising from my infusions. I comb my hair a certain way or wear a hat to cover my hair loss or bald spots. There are some days that I may look sick, but there are some days I don’t look the part, but it does not mean that I am well. You might actually catch me limping or maybe with my droopy eye and facial paralysis, but on those days, I tend not to go out in public; if I don’t have to.
9. ” I know someone with Lupus, and they died” What if I told you this while your battling a life threating disease? Not very encouraging is it? Yes, I have actually been told this by quite a few people or that they know someone with Lupus and well… they are not doing so great. This is not what we want to hear. I know the fate Lupus has for me, or what can or could happen, but I really do not want to be reminded of it. Every time I learn that one of my support group members lost their fight to Lupus, it really hits home, for all of us. It’s a scary reality that we do not want to be reminded of. We need more encouraging words, and support.
10. ” Are you loosing/gaining weight?” Yes, probably and why would you point that out? In my case I have been loosing a lot of weight lately, and no it’s not on purpose. I am very self conscious of how I look especially coming from someone who use to run 2 miles a day and was very actively fit. Some of us try so hard to stay fit, but our disease does not always allow us to have regular fitness routine. ( and those who are able I am jealous) Exercise can be very difficult, and the side effects of the medications can cause us to either loose or gain weight. At this point I just try to do what I can, when I can. I’ve come to grips that I might not have my old body back, but its okay what is important is being healthy.