Some Friendly Advice for Loved Ones and Friends

First things first, everyone should buy one of these awesome shirts!

Hope to fight against lupus

Our Awesome Hope Shirt!

The profits will be go to my Walk for Lupus Now Team, Frickin’ Rican Lupies, and that will be donated to the Lupus Foundation of America Piedmont Chapter. For a donation, go here: $20 will get you a shirt, just email me or FB message me the size! Thanks in advance!

Okay, now, this post is certainly not meant to offend anyone but it is something that should be said. We all have our support systems and those systems consist of people we love. The hard part about being there and taking care of someone is seeing what they go through and not being able to stop it. Because the supporters (this includes us lupies, we’re not just the ones being supported) are so frustrated and usually do not know how to help, they sometimes say things that really just don’t make us feel better. It’s certainly not their intention to make us feel bad. I’m pretty sure I’m guilty of some of the “don’ts” I’m about to write about. But how will they know these things if we don’t tell them and explain why something makes us feel bad? Or the opposite: how will they know what really helps us out if we don’t tell them that either? This list is not all inclusive, not even close, but I hope it will start people thinking about what they do and what they can do to help those in pain.

1. DON’T tell us not to take a medication, to take it “only if you REALLY need it,” or explain to us all the ways it’s bad for us. For the most part, we usually know what the side effects are and what the medication does. Most of us have been on them for years so we may know a little better what to take and what not take. Where this really comes in is pain meds. Yes sometimes doctors give us prescription pain killers or muscle relaxers or whatever. We are not getting these just for fun, if the doctor has given them then we are in a whole lot of pain. Over the counter hasn’t worked. Most of don’t take them everyday but we take them when we need them. We know narcotics are addictive and people do take them just to get high but we don’t. Please don’t lecture us about it and make us feel bad. All that happens is we decide not to take and sit in excruciating pain all day trying to hide it from you. Also, don’t make comments about how the country is over medicated and no one needs these drugs (this comes from a friend’s ex-boyfriend). Especially after you know how many we take a day. This just makes us feel awkward, then annoyed, then angry. And then you get broken up with.

2. DO offer to do little things around the house. I have an extremely difficult time doing certain things around my house like scrubbing the tub and changing the bed sheets. Obviously I do them but it takes me twice as long. If you’re not busy, why not help your friend out by doing one of these things? Or maybe ask if they need something from the store like milk if you happen to be going there. Chopping food is another one, a lot of us have trouble with our hands and having someone else chop makes it so we can all have a lot more laughter at the dinner table.

3. On that note, DON’T force your help on us. If you offer, that’s fine and a lot of us will take you up on it. However, please don’t assume I need you to do every single thing for me. It drives me insane! If I can’t do something I’ll ask for help. But I don’t want to feel like I can’t do anything and I know a few people who are like this. You have to encourage us to be independent. Part of that is letting us do the things we can and ask for help on our own for the things we can’t.

4. DO invite us out to different activities! It’s really not fun always feeling left out or only being invited to go see a movie all the time. Don’t get me wrong, movies are great, but if you’re planning a picnic, or a beach trip, or even a hike and invite everyone else, don’t exclude us! Sometimes, you think it’s just easier on everyone if you don’t invite the person with joint problems – you think you’re saving them from the embarrassment of saying they can’t. Honestly, it hurts us worse to find out later that we were left out than it does to actually be invited and get to say we can’t go ourselves. And sometimes we are up for going. Sure we might need a couple of extra breaks but that doesn’t mean we can’t go and enjoy ourselves!

5. DON’T ask us about certain things and them yell at us! Oh man, I can’t tell you how often we do this in my family. Between my mom, my sister, and I, I don’t know how we don’t drive my very mellow, level-head dad insane. None of us really know how to handle the stress that comes with worry or bad health news so what do we do? We all yell at each other. “Well you should do this, and not this!” “I don’t want to do this or I would have done it already!” And many much more colorful things come out of our mouths. Don’t do this. Please. It solves nothing. It makes us even more stressed out which just makes us even more sick. If you don’t think you can say something without screaming at the person, then just say ok. Or even “That sucks!” Seriously, sometimes that’s all we really want to hear.

6. DO remember that what you do right now for us is and will always be enough. It’s hard loving someone who is sick. It takes a toll on the whole family. I can only imagine how my parents, sister, and brother feel every I call them to say something else is wrong. There is a need to do more, to take all the bad stuff away. Please, PLEASE believe me when I say that you just being there is enough. Knowing that we have this support system to fall back on gets us through so much more than you’ll ever know.

My wonderful family

Okay so not the best pictures because most of us are in PJs but this is my absolutely wonderful family who I have NO idea how I'd get along without!
Left to Right: Pop, me, Jon, Abuela, Mami, and Jolene

Published in: on March 28, 2012 at 5:42 pm  Comments (2)