Dealing With the Loss Associated With Having Lupus

When we are growing up it is fun to sit and think about what the future will look like. We think about who we will marry, the job/career we will have, and what our family will look like. We think about how many kids we want to have and what qualities we would like to have in a spouse. As a kid/ young adult, I was no different. I sat around dreaming about my future like anyone else. However, when I was sitting and dreaming about what my future would look like I NEVER pictured it would look like it does now.

Lupus changed my future

I always thought I would be married to the love of my life by my mid-20s and would start having kids soon thereafter. I planned to finish my master’s degree in nursing and start teaching at one of the local nursing programs. Lupus changed all of that. It came in like a wrecking ball and destroyed many of my hopes and dreams.

You are probably thinking, "this all sounds a little dramatic, Amber." Sadly, I wish it was. I wish I could tell you that I was only kidding. But I can’t. The future I dreamed about as a young woman will never be the future I actually live in. The big things that I had always planned for like having my own baby, or finishing my master’s degree will never be possible.

The reality of living with lupus and other conditions

Over the course of 6 months, at the age of 26, I was diagnosed with lupus, endometriosis, and a few others. Over the next few years, I was diagnosed with a multitude of other life-changing conditions. Learning to live with all those medical issues was hard enough and too much to think about most of the time. So for a while, I lived in a total state of denial. Thinking and hoping that my health wasn’t "that bad," and that I would eventually, somehow do the things I had hoped and dreamed about growing up.

In the months around my 30th birthday, I really struggled. I was depressed as I looked at my life comparing it to the things my closest friends were doing. Many of them working in their chosen field, and those who wanted to had completed their education. Many were having their first babies, some were even having baby number 2, or 3. Most were married and seemed to be happy with how their lives were playing out. They were doing all the things I so badly wanted to do, and I was silently suffering as I got baby announcements, shower invites, and invites to weddings. Knowing my life was far from what I had planned and looked nothing like theirs.

But I still held hope that one day my health would get better. Hoping that one day they would find a cure for lupus and better options for women with endometriosis. I held out hope that I would find my person, and have my own babies. Hoping I would be able to go back to school to finish my master’s degree. Sadly, over the next few years, I lost more and more hope that things would get better. Because instead of improving my health got worse and more medications that were unsafe for pregnancy were added.

Feeling less hopeful

A couple of weeks ago I turned 36. One year past the age when you are considered high-risk and considered to be a geriatric pregnancy. Last year I still held hope. But this year, all hope is gone. I had to face the fact that I will never carry a child. That I will never get to know what it feels like to have a baby kicking on the inside.

I will never get to watch my belly grow as I grow a tiny baby, I will never know what it is like to see that pink line and get to tell my husband (who I don’t have) that WE are pregnant. Honestly, though, as much as I want to carry my own child, I don’t think I could. I would never want my child to have to deal with all of the medical problems I have. Knowing that many of my condition has a genetic link would make having a baby almost out of the question

Coping with what I cannot do

I know I am not alone in this. There are millions of women living with lupus, or infertility of any kind. I know there are many women who will, or have already had to deal with the fact that their dream of being a mother is gone. I know that there are other ways of becoming a mother. Which I still hope to experience. But it just isn’t the same. It just isn’t.

I truly think that the hardest part of living with lupus, endometriosis, or any other life-altering disease isn’t dealing with the disease itself. It is dealing and coping with the things you cannot do. As well as the hopes and dreams that the disease takes from you. I still hold out hope that one day I will meet the man I am supposed to marry who will love me despite my health. Unlike men in my past. I hold out hope that maybe one day I will get to go back to work, doing what I loved so much, in the field I love. Even though I know deep down that this is unlikely.