What You Need To Know About Lupus...Even If You Don't Have Lupus

One day, I asked my husband if there was something he thought I should write about. He said that I should write a post called, "Yes, lupus CAN kill you!" Uh...That's not exactly the message that I'm trying to convey with my blog. After all, having lupus is not an automatic death sentence. I don't feel like death is knocking at my door. An article by Everyday Health says, "The overall prognosis for people with lupus has improved a great deal in recent years. The 5-year survival rate for lupus patients seen at Johns Hopkins University from 1949 to 1953 was only 50 percent; today the 5-year survival rate is over 90 percent and the 20-year survival rate is over 80 percent." This is incredible progress. But even though things are looking up, my husband is right. Lupus still continues to take lives.

I don't want to sound bleak and I'm not trying to scare anyone. This is meant to be a wake-up call. A dose of reality. Maybe even a life saver.

If you have lupus, my words for you are simple: Your life matters. In this life, you only get one body. Take care of it.

If you do not have lupus, you need to know: Your actions can affect the health of someone who does. When it comes to lupus, ignorance is not bliss. One man's ignorance can lead to not-so-very-blissful consequences for someone with lupus. Something as simple as contact with a person with lupus when you are sick - a handshake, a hug, or even something as inconspicuous as sitting close by - can land them in the hospital or cause them to have a life-threatening lupus complication. At the very least, because they are likely taking immunosuppressives, they will probably catch what you have...except that having lupus will cause their symptoms to be more intense and they will take much longer to recover. "Oh, I just have a cold. I'll get over it in a day. You'll be fine." Or maybe not.

If you work with someone with lupus, putting them in a situation where they can't take care of themselves can force them to have a lupus flare. This includes things like regularly pushing them to work beyond what their body is able without allowing for breaks, putting them in situations in which they consistently miss meals, or even adding unnecessary stress by repeatedly asking them to complete tasks without proper notice ahead of time (when earlier notice could have been given). Notice my use of the words like regularly, consistently, unnecessary, and repeatedly. Every job has its busy seasons - times when people have to push harder, make extra sacrifices, put in extra hours. I am not saying that lupus patients should be shielded from seasons of intense work. I am saying that when they come, proactive measures need to be taken to ensure that they will continue to be able to work with no long-lasting repercussions to their health.

Here's the problem: lupus doesn't care! Lupus doesn't care how important the project, or how crucial the deadline, or how noble the goal is. Lupus doesn't care that this is not a good time for a flare. Lupus doesn't care that there are consequences for not getting everything done - it has its own consequences to exact. This may sound scathing, but it might be helpful to think of it this way: Is this project or job worth someone having a flare, being hospitalized, or having their ability to continue to work put in jeopardy? Take that question further: How can we get this done in a way that won't sacrifice the health of this person? You may be surprised how many solutions this question holds. You may even find that you'll have better results in the end than you would have had otherwise!

If you are a close friend or a family member of someone who has lupus, I'm going to guess that you've probably done what all of my friends and family did when they found out I have lupus...You googled it. Here's my advice: Do your homework. Don't buy in to every article you read. Investigate the credibility of your sources. (You can see some of my favorite resources here.) Don't learn about lupus so that you can give advice. Learn about lupus so you can be a great supporter! Learn about the disease and how it works. Learn about what kinds of things can cause flares. Learn about ways you can be a great caretaker or friend. Learn as much as you can!

How To Encourage Someone With A Chronic Illness (Epilogue)

My husband is my hero. He works full time while pursuing his Master's. The night before his very first day of grad school, he was with me in the emergency room. It was a very long night. We didn't know yet that I had lupus, but we did know that there was something very wrong with my health. Everything I couldn't do on my own - the list was very long - he had to help me with. I'm able to function a lot better now, but he is still my greatest helper and supporter. He lifts me up when I can't stand on my own (literally). I honestly don't know how I would make it without him. I lean on him when I need strength, but I am also very aware that, at times, his strength runs out, too. The burden he feels is very real. He can't physically feel my pain or symptoms, but he is living with lupus as much as I am.

I am not the only one who needs encouragement.

He also needs to be heard.

He also needs people who will show him empathy. (Someone once asked me, "Can't your husband help you more?" No. On top of work and grad school, he spends much of his time taking care of me. He does not have much in terms of free time. He is exhausted far too often. Put yourself in his shoes - that's what empathy is, after all - and you'll see how horrific such a question can be.)

He needs people who understand that his identity is much bigger than being a caretaker or the husband of a lupus patient.

He needs people to consider the gravity of the words they speak to him.

He needs people to be slow to advise him. (You would be shocked to hear some of the useless advice people give him.)

He needs people who will celebrate his victories. (There is so much on his shoulders that it's really easy for him to not notice when he's had a victory.)

He needs people to understand that he has a full range of emotions. (He's got a lot going on! Let him feel the feels!)

He needs people to live life with him. (He needs a sense of normalcy as much as I do.)

There are days when he can use some help and tangible expressions of encouragement. (In the days that followed my lupus diagnosis, someone that my husband and I look up to gave him a big hug. He's not typically a "hugger," but this hug in particular meant something to him.)

And from time to time, he needs someone to ask him how they can encourage him.

People have told me that I'm a superhero - that they can't believe all that I've accomplished while I battle lupus. I'm not a superhero. To be honest, the reason I accomplish so much is because I have an amazing husband who sacrifices for me everyday and doesn't let me give up when things get hard. If you ask me, I think he's the real superhero! People don't really see all that he does for me. They often rush to give me encouragement, but forget that he could use some, too.

Don't neglect the caretakers. They do a lot! It can be hard for them to keep from drowning amidst their endless list of responsibilities. The burden they carry is heavy and discouragement is often looming much too near. (Imagine how it feels to see someone you love in pain everyday and not be able to take it away.) So don't forget about these heroes who often go unnoticed. The encouragement you bring may be the very thing they need to make it through the next week!