A hand is putting a letter to lupus into an open ended mailbox while an iteration of the same hand is reaching into the other side to receive it.

To Whom it May Concern: My Letter To Lupus, Part 1

Lupus,

For as long as we’ve been together, one would assume we’d be friends by now. But honestly, that couldn’t be farther from the truth. If I had the chance to drop you off in the middle of nowhere, you better believe I WOULD. You just came into my life like a storm totally uninvited, but you didn’t care. You brought all your baggage and all your other chronic condition friends along as well. In fact, you just moved right in and took up residence.

You came in like a true wrecking ball not caring if you destroyed things in your path. And you were more concerned with taking over my body then what the changes you were creating inside might be causing on the outside. You didn’t care that the fatigue you cause was making it very hard to keep plans and friends – that the people closest to me were starting to think I was flaky – or that I just didn’t care, or didn’t want to see them or hang out anymore.

"You invaded my body...

You didn’t care that my best friends started “forgetting” to ask me to do things because they figured I wouldn’t be up to it anyway. You didn’t care that because of you the people I loved and cared about decided to walk away because they didn’t understand the new me. Or they just didn’t care to learn. It doesn’t impact you, you got what you needed. You invaded my body and took over so what does it matter if I lost friends in the process.

You are and your cohorts are pretty darn selfish. All you care about is you – making sure your takeover is complete. It doesn’t matter to you that I am so fatigued, constantly sick, and hurting so badly that it slowly became hard to do my job – the job I loved with every fiber of my being. It didn’t matter to you or your buddy migraine that you were making my life hell. The constant vomiting, migraines, fatigue, and constant illnesses among so many other issues made is basically impossible to work. But what do you care?

I had to give up my dreams

It doesn’t matter to you, or your friend, endometriosis, and the others that I not only had to give up my dream career that I loved with my whole being and worked so hard to get. It didn’t matter to you that I had to give up the dream of finishing my Master's in nursing education.

That didn’t hurt as much as having to give up the dream I had my entire life. Literally as long as I can remember. The dream of having my own baby. Between you, and endometriosis, and a few others that is no longer something I get to do. Not safely anymore.

You all just sweep in and take over. You come in and act so nonchalant and vague for so many years. So much in fact that many of us suffer for YEARS with no definitive answer as to what’s going on. myself being no different. I had symptoms going back 10 years before I was diagnosed.

"I hate how self-centered you are"

But you don’t care. For me, that’s not the most infuriating part of having you around. The part that makes me the angriest is that you play games. You show up and make our lives hell for weeks, months, or even years.

I hate how self-centered you are. Each and every day our life has to be centered around you or the million medications we have to take to keep you and your buddies in check. The part that frustrates me the most is that after dealing with you daily for days, weeks, or even months you just suddenly leave giving no indication that you were leaving or when you will be back.

"It's changed me for sure"

We all know that you will be back. It’s too good to be true that you would just leave for good. So then we have to live our lives wondering when you might make your darn return. If I am going to be quite frank it sucks.

Living with lupus is not for the faint of heart but it is just what we do.  It’s changed me for sure. In some ways for the bad, but in some ways for the better.

Continue reading Part 2.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.