About a year ago, I shared my experience at the clinic with a little girl by the name of Lara, who's mother also had Lupus. Upon sharing my afternoon that day, many asked why I don't write a blog... and honestly there were several reasons. A lot of them were insecurities, not wanting to feel like i'm shoving things down people's throats, not wanting to be pitied or doubted. The more I've read articles the past year, the more it made me realize that it shouldn't be seen that way; if anything, it should be informational. To help people understand a little better the unknown of not just Lupus, but many auto-immune disorders/ chronic illnesses. One article from buzzfeed stuck out to me in particular: 19 Things People With Chronic Illness Want You To Know. Most are followed with a photo or a quick comment, but I thought I would go in depth a little on them.
19. If we had the choice, we would never cancel plans.
You're not unreliable - your health is... words I follow full-heartedly. I find friends and family getting upset at times when we make plans and I have to take a raincheck. Many don't understand that it's not because I don't want to spend time with them, but that I simply don't feel up to it or am tired to the point of exhaustion.
18. Our illness won't just 'go away'. It isn't a cold.
It's hurtful, not to mention embarrassing to have people make comments everytime they hear you have a flare-up, or an injury that's chronic related. I grew up being in pain severe and often, as well as bruising easy. I didn't get sick much but when I did, it was rough. Sometimes I feel that's what people remembered me by. Nothing is more humiliating than people putting you on the spot asking "now what?". After 10yrs of it, I still had a distant family member over the July holiday make a joke when she saw me icing my legs asking "so what happened now?". It used to make me so upset, to where I wouldn't want to go in public, and sometimes I get moments where I don't. But meeting others with common-grounds have shown me that it isn't me that needs to change in that situation, it's them.
17. We don't know how to answer you when you ask us if we're feeling better yet.
Most of the time, I just smile and say "I feel good today, thank you". It's hard to explain to some that it will vary from day to day. In my case, your antibodies attack good tissue causing inflammation anywhere it can. One day I could feel alright, and the next my legs will be too swollen to get out of bed without struggle. You then spend the day icing them, taking anti-inflammatory meds, and plan your day around it.
16. Sometimes, all we need is to just know you are here.
On days I struggle, it's pretty simple things that make me appreciate someone that much more for being in my life. When someone offers to help around my apartment or make dinner, quick visits or walks when I'm up for them, simple reminders from close friends. I try to remain in the lives of others as much as I can, and it's always heartwarming to see those who try to stay in mine.
15. We have exhausted all resources, so if there was a cure, we would know about it.
They always say if you look up your hangnail on webmd, you'll find out you're dying an hour later. Though I'm not big on self-diagnosing, I do research Lupus and similar cases, case studies, clinical trials, etc. I am very fortunate to work where I do, and have learned so much more about my own body. Though they claim there are no cures for many chronic/AI cases, there are several alternative options than steroids and disability.
14. We're trying very hard to lead a normal life.
One thing that hurts is when people overextend help thinking I am helpless. Prior to my diagnosis, I struggled for months and had a hard time trying to stay up and pain free. I still have many "low-spoon days", but I still work at least 40-50hrs a week (mind you it's no desk job), and do projects as they come along... I may drag some days, but I still do what I'm asked to. I'm fortunate to work with a great team who respects my situation and lets me take breaks, and are wonderful with communication if I need to leave early/make up time.
13. Some days, it's a struggle just to get out of bed. But on other days, we feel as if we could run (well-part of) a marathon!
This is in conjunction with #17. Each day is different; all you can do is take it a day at a time with as many spoons as you have.
12. We have a difficult time explaining how it feels to suffer from chronic pain.
The spoon theory is the best thing I've ever heard; not just for Lupus, but many others as well. Being a "spoonie" is theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion...sometimes we have an abundance, other times coming up short. When you have a good amount of energy one day, it doesn't mean you can save some for the next day. Of the like, you also can't "borrow" energy when you're running low on it.
11. We need a LOT of sleep.
Many friends and relationships have made the joke that I sleep SO much. I still am in a daily routine to where I take a 2hr nap (on average) after work before I can catch up on laundry/clean our home/etc. I'm very fortunate that Jesse helps out a lot when he is home from work. People who are around me before those naps will see I physically cannot function unless I take it. You can't put a number on the fatigue some days. (Makes me sad I hated naps so much as a kid!)
10. Please, please do not tell us that someone, somewhere has it worse than we do.
One common phrase I firmly believe in, no matter the circumstance, is that it can always be worse. I've learned to appreciate what I'm capable of doing from day to day, even if it doesn't feel like much. There are rough days though, and the last thing we want to hear is someone tell you "other people are worse off". Sometimes we just need a friend or support.
9. You'd think dealing with pain on a daily basis would mean we always know how to manage it. Nope.
If anything, we learn how to deal with it better emotionally. Things are different from day to day, and you learn to take it as it stands. It's like when they say you lose a loved one, you don't get "better"... after 20yrs, there can still be a trigger to set you off. Just like anything else, it's an emotion you act on it, address it, and deal with it.
8. We DON"T want you to stop asking us to hang out.
I've caught myself agreeing to go out on nights I KNEW I couldn't do, for the simple purpose that I was afraid if I ditched, I wouldn't be asked to go again. It's a struggle finding out which friends understand it really is you, not them. And that just because you decline 3 nights in a row doesn't mean you will the 4th. It seems like rejection, but I promise it isn't. We will keep you in the loop if you let us.
7. Just because you haven't heard of our condition doesn't mean it isn't real.
I don't like pushing this one much, but a few things I hear a lot when I tell someone I have Lupus is, "Oh, my grandma had that and she died" (<--popular one) "Oh I hear only old people get that" "Are you sure it's that? Have you ever watched House?". Many blame a lot of AI's or Chronic Illness, but when you are the one with it, you feel it everyday. You push through it and understand just how real it is.
6. We may not look sick.. but it doesn't mean we aren't sick.
The only reason I think people notice right now is because in my last flare-up, I wound up with a bad infection and gained nerve damage in my right leg.. thus either walking like a complete goon or wearing a bulky leg brace. If you sit and talk to me having never met me, most will never have a clue until they spend a significant amount of time with me.
5. We don't necessarily want sympathy, we just want acceptance.
One thing I've always been uncomfortable with is getting put on the spot, whether it be complimentary or sympathy. I never know how to respond and always say something awkward and dumb. I don't like to think of my life as a sympathy case; I have a great job, family, friends and hobbies. Life is good. Everyone has their struggles and gets through them daily. That deserves praise!
4. We can't just take medicine and make it all go away.
You would vomit if I showed you all of the medications I've taken over the years. One reason I've slipped away from Rx meds is because they never solve the root of the problem, they simply mask the symptoms you experience. It isn't to be taken for your overall health. While on steroids for anti-inflammatory purposes, I was taking anti-depressants for my mood, an appetite curbing supplement, something for the chronic headaches I would get, was constantly dehydrated; it never ended. After dozens of rounds of mixed meds, it's rough having people ask why "that one medication on the commercial didn't work"
3. More often than not, we want you to ask us about our condition.
I dont typically like to bring it up unless I'm asked...but I'd rather explain what is going on than have someone feel a certain way about me from not knowing all of the facts.
2. It may be a little difficult for us to listen to your adventures.
It doesn't mean I don't want to hear about them, or share my own! Some days it may stink to see others engaging in things I can't regularly. But I love seeing you happy and enjoying life more than anything. If I ask how your weekend was, I don't want you to bore it down or don't want you to feel bad when you ask me and I say I didn't do much.
1. Most of all, we want you to know we appreciate you and everything you do.
I've learned over the years, that it gets tiring explaining things to people who ask over and over but don't listen or value the importance of caring for my body. It's nice to have those who make you feel just as important and don't treat you differently when you're having rough days.
