To Whom It May Concern: My Letter To Lupus, Part 2
Editor’s note: This is the second article in a 2-part series. The first is “To Whom It May Concern: My Letter To Lupus, Part 1.”
You are not easy to live with. From the day-to-day pain and fatigue to the social and emotional issues that come from living with any chronic illness – sadly, you bring it all. All we can do is hope. I hope that one day the research will come through and find a cure.
Maybe one day the researchers will find a way to make you go away forever. Until then we have to live with you every single day. Dealing with the pain, fatigue, rashes, sun sensitivity, and all the other fabulous things you bring us. That not even including all the issues your dumb buddies bring along.
"You've taken my job, my friends..."
If I can be frank you have ruined me in so many ways. I know I shouldn’t give you such credit but you have. You’ve taken my job, my friends, and my independence. You’ve (along with your buddy endometriosis) have taken away my ability to bear my own baby. Sadly, in many ways, I feel like you’ve taken who I am at my core. I am no longer the strong, feisty, super independent woman I used to be.
It’s hard not to worry about any new relationship I start. I drive myself crazy going back and forth on how and when I bring up my unwanted “body guest.” I know some of you reading are thinking I am an idiot and thinking it’s not that big of a deal. But when you have had as many people walk away simply because of your illness you’d put a lot of thought into it, too. You would honestly be amazed at the number of people who want nothing to do with someone who has any kind of chronic health issues. It’s actually appalling.
Fighting for who I used to be
I really try not to let my illness consume me but when you can no longer work because my lupus took that from me too. So your day centers around taking your medications and how you feel it’s hard not to think about it. But I am working hard to fight you on that. I will take me back. It’s time to fight to get the Amber I once knew back. I know she’s in there but she’s buried deep.
I decided a few years ago that I wasn’t going to just give up the knowledge I gain while working in the medical field and all those years in school. So I am finding ways outside of the box to use my nursing education. Like writing, running my support group, or speaking on podcasts.
"It's my turn now"
I am determined not to let you, lupus, ruin me completely. What I will do is make sure I work hard to make sure as many people as I can reach know that they are not alone in this fight. I promise to teach and educate as many as will listen to what lupus really is, and make sure that they all know that it is more than a sun rash.
You, lupus, may have taken over, but it’s my turn now. This is my life. You have to be here, but you no longer get to run the show! This is Amber's world. I can’t wait for the day that I can say goodbye to you and know that it’s for good. This is my world and you just get to live in it!
How often do you experience arthritis or joint pain?