Posted by: hockeygrl1 | May 5, 2011

What I Wish People Knew Before They Speek

There seems to be a lot of people including my family that does not understand my illness and they say things before they think about them. I find this funny, in a bad way, because I tell them what I’m going through all the time. They still say insensitive things and expect too much out of me and I don’t know if they just don’t realize it or if they just don’t care. Sometimes I wish they could feel what I do just for 2 days. I say 2 days because I’m sure they’d do too much on day one and feel the extra pain and exhaustion I’m so familiar with on day 2.

Here are some things that have been said to me since I’ve been sick. I recommend you don’t say these things to anyone battling an illness.

My brother-in-law told me I looked like death. This was on Thanksgiving Day of 2007. The year I first became ill and 2 days after I received my first chemo treatment. I knew I looked sick. I passed out in the shower that morning when I was trying to not look like death for my family. That evening I told mom that the kids and I were going to stay with them for a few days because I needed help. She didn’t understand why I would need help.

There have been multiple occasions that people have told me to drink more caffeine or drink a five-hour energy to fight my fatigue. I’m sorry guys, it doesn’t help. It never has. For years I’ve been able to sleep all day on the weekends after working a full week. I wouldn’t do anything with the kids and I’d let my house become a mess. I know now that it was lupus causing all my fatigue after working all week.

Yep, people have also said, “It must be nice to nap all day.” You know what? It’s not! I want to work. That’s why I got a college degree in my 30’s. I want to work in human resources somewhere as a trainer. I love it. Lupus has taken that away.

Chemo is chemo. It doesn’t matter if you get it for lupus instead of cancer, you feel crappy after. You know what, I was there longer than most cancer patients. It took 8 hours for my infusion.

I’d love to get out more and spend more time in nature. I have become photosensitive. I think that is the thing that is hurting me most of all. I love to spend time in the water. The kids and I have gone to the Wisconsin Dells in Wisconsin many times and each time we love it. We spend hours in the pools and on water slides just loving the water and sunshine. You see, being in the water is something I love. Now I have to worry about the sun making my lupus worse. I wear my big had and long sleeve shirt outside even on cloudy days. I need to avoid being out in the sun from 10-2 when the sun is the strongest. Being outside can make my sick so please don’t suggest it.

My doctor has me getting exercise when I fell up to it. Exercise will not fix my fatigue. It may not help me lose weight when I’m not steroids too. I’m trying as hard as I can to walk 60 minutes each day. It’s really hard when your arms and legs feel full of lead and your muscles hurt from fibromyalgia.

I need to add to this list:

  • Everyone gets tired
  • I wish I had time to take a nap
  • It can’t be that bad
  • You’re just depressed
  • It’s all in your head.

One of my favorites is it must be nice not having to work. Why would you say that to someone who is ill? How is being sick nice? I made my sister a bracelet and instead of saying thank you she said. “I wish I had time to sit around and make jewelry.” How insensitive!

Doing things with me may be a little more difficult. I need to take breaks. I may need to sit down and rest often or cancel at the last minute. I’m sorry, but how I feel is unpredictable. I might be feeling good at noon, but by 4pm be tired or in pain or sick in some other way. Lupus is unpredictable.

Please don’t tell me that there are people worse off than me. I know that, yet I wouldn’t wish lupus on my worst enemy. It’s hard and not understood by many people. It’s not like a physical disability where people are happy for anything that they accomplish, yet it’s just as limiting.

I hope that how I feel now will pass and I’ll be able to join productive society again, but I don’t need people telling me that. I’ve been waiting to come out of this for almost 4 years now and it’s hard to see a future not felling like this. Yes, I do put on a happy face and say I’m doing good when people ask ‘how are you’. It’s my fake smile and answer because people don’t really want to hear how crappy I feel.

I know this sounds like I’m just b*&%hing about things, but it’s the truth and it’s how I feel. Please think about what you say before you talk to anyone that is ill. We are battling our illness every day with all of our energy. We wouldn’t say something insensitive back to you, so please don’t say it up front to us.



  1. Hi Ann,
    I soooooooooooooo understand exactly what you are saying. I know MS isn’t the same as Lupus, but they share so many of the same symptoms. Sitting in my wheelchair, so many times I’ve had people say “must be nice not to have to walk”. The first few times I cried. When I was still using my scooter, a man at the checkout at Target told me to “get off my fat ass and walk like the rest of us. Stop being so f-ing lazy!” That hurt! But even more so it pissed me off! Now that was from a stranger who doesn’t know me, or about me. But when things like that are said by people close to us, especially family, it can be heart-breaking. I don’t know why they do it. Some are just naturally butt-holes, but others are just not thinking before they speak. They either like the taste of toe-jam (from having their foot in their mouth) or they enjoy the smell of sh*t (from having their head up their ass!) I guess you just have to ignore them, or say something back…like “lucky for you stupidity is legal!”

    • People should really think before they speak. I mean I don’t work so I can take care of my family! I’n not lazy. Hell, most days I’m up before Jason and Karley. Another thing is that people can be fat because of medical issues not just because they’re lazy or eat a lot. I’m on 3 meds that cause weight gain around my middle in addition to kidney issues.

      It’s so sad that the image of healthy is what people want and if you don’t meet it, you’re lazy.

      I hope you’re well Diane. Keep fighting!

  2. I can so relate. It is easy for people to judge, but unless they’ve walked in your shoes they can’t ever really understand. But I think it helps to raise awareness, so they don’t make ignorant or insensitive statements that cause us even more pain. ~ Peter

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