I always find it funny how quick people are to judge. Recently, I’ve been told by a few people close to me that I’m not as “nice” as I used to be and that I’ve changed. My question to them is, what do you expect when you’re at a constant war with yourself? It’s hard not to experience any change in behavior. I know that anxiety and depression are the first to show their ugly faces when I get a lupus flare-up. When you’re not in a good place both physically and mentally, “nice” isn’t always the easiest, nor is it the first thing that comes to mind.
Here are some examples of how my chronic illness has altered my behavior and inspired me to make some adjustments in my life that I should have done a long time ago.
1. I stand my ground. There are many times in the past where I would push myself beyond my limits to make others happy. While I know I tend to be a people-pleaser, I do not enjoy having to stay in bed for the next three days. So, I now limit myself and am slowly learning it’s OK to say “no.”
2. Patience.I will be honest and say my patience isn’t as it once was and I can agree with those around me. I’m not proud of this by any means. But whether anyone likes to admit it or not, pain changes you and on days of high pain levels, I am less patient.
3. I no longer try to just please everyone else.To be honest, this is probably how I ended up like this in the first place. Ever since I can remember I’ve always put everyone else first – carried their crosses and always put myself last. I have learned that trying to please everyone all the time sometimes leaves no room for yourself. Self-care is one of the most important factors when you have a chronic illness. And this is something I am still learning and should never take lightly! You need yourself to be OK in order to get through this.
4. I make inappropriate jokes.There are times I am really down and I make jokes about myself. Then people around me get extremely upset. I get told I’m being negative and mean towards myself. Truly, that’s not it at all. I am literally trying to make myself laugh at the situation because I already cry enough. Laughing is something I need.
5. I don’t need you.I’ve come to realization that I don’t reallyneed anyone bad enough to keep stress in my life. As soon as I started slowing down because my health was declining, my so-called “friends” were nowhere to be found, sometimes even family members. I truly believe that if all you’re going to do is bring me down, I’m not sure if I really want our relationship. And if me getting sick is an inconvenience for you, well, then, it was nice knowing you… I’ve learned to be on my own and I’m OK with that. I will not beg you to be around. I’ve accepted me, but have you?
6. My filter is on low.I find myself recently not sugar-coating things as much as I used to. I always would consider myself a straightforward person, but I find that now I might be too honest. Through all my struggles I’ve learned I just want an honest and straight answer. I don’t want to dance around my diagnoses nor that there is no cure for what I have. I probably shouldn’t be reflecting this on others, but I notice I do… I am starting to believe as my body breaks down, so does my filter.
7. I live in my pajamas! OK, not all day every day, but the first opportunity I get, I always change into my pajamas. This is how I am comfortable and being comfortable is what my body needs. Please don’t assume this means I’m lazy, because that’s not why. My home is where I don’t have to worry about the outside world. I can be truthful with myself and my illness.
8. I sleep.My rheumatologist told me day one, you should probably get about 12-14 hours of sleep a night to combat a lot of the chronic pain that you have. He told me I had to get as much rest as I can because this is what my body required. I looked at him like he lost his mind. Oh boy, did I learn he was right! Now I will choose to sleep over pretty much everything. My body needs the rest and some people call me a grandma because of this. What people on the outside don’t realize is that my body doesn’t work like theirs and sleep is something I need in order to function somewhat correctly. Sleep was never a priority for me but now it’s one of my number ones, unless “painsomnia” shows up…
Just to be clear, my goal isn’t to be mean, disrespectful or seem selfish in any way. The issue is that people really do not have a full understanding of what I am going through on the outside. They can try their best and have the best intentions but they are still not you. People on the outside might push you or convince you to do otherwise. Please don’t let them, because it’s our bodies that are in pain and we must stick up for them! You are your best advocate. As we continue to fight our battles with our illnesses, we will learn the things we need to change. We might even experience some falls and that’s OK. The only part that matters is that we always get back up and never stop fighting!
Previously Published on https://themighty.com/2017/11/lupus-behavior-changes/