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Finding Positives in My Life With Lupus Doesn't Minimize My Struggles

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Being diagnosed with lupus can come with a lot of negatives. It is truly life changing. Honestly, there are a lot of days that it just plain sucks. But for me there has been a lot of good that has come from it, too.

Don’t get me wrong, it is really easy to think about the negatives and all the bad things. To focus on all the things lupus took from me. But I have learned the hard way there really is no benefit in that. Sure, I have my days where I wallow and focus on the things I have lost or the dreams that will never happen. Because that’s normal. But overall I try to remember the positive things that have come from my diagnosis.

I could sit here and tell you about the relationships lupusstole from me.” About the people who walked away because they couldn’t handle the disease. Or the changes that occurred. We could talk about how badly all that hurt. While that sucks and I still miss those people and wish they wouldn’t have chosen to walk away, I realize I am better off.

But because of my diagnosis, I have truly met some of the most amazing people in the world. I have friends across the U.S., and the world for that matter, who are just amazing. These people care so much about me and are truly the best friends a girl could ever ask for. If it weren’t for lupus, I wouldn’t have ever met my best friends. Some of my best friends are people I met while I was working. Working as a registered nurse. A job that I loved more that you can imagine. A job that I imagined I would work in some capacity until I retired. But lupus had another plan. I could sit here and tell you how angry I am that I no longer am able to work. That because of this damn disease I had to quit my career and wasn’t able to finish working on my masters in nursing education. But what good is that? It happened. I can’t change it.

What did happen was a support group.

Five years ago I had a dream to start a support group because I couldn’t find one where I felt I was getting what I really needed. I put together a group of five other women who also had lupus and together we started Lupie Groupies on Facebook.

Lupie Groupies quickly became my passion. A project that I could pour myself into. The group quickly grew to be so much more than just a group where we went to discuss the disease we all had in common. It quickly grew into a family. Since that day five years ago I have a very extended family who I know will support me know matter what. This group is not like any other I have ever been a part of. And I don’t say this because I started it. I say it because it’s true. The people in our group support one another in everything we do. We never put each other down or call each other out even if we disagree. It has been something that has saved me over the years, something that has truly kept me going when I wanted so badly to throw in the towel.

My other passion has become this, writing on my blog. Something that if someone would have told me five years ago that I would be a blogger, I would have laughed at them. Blogging has become an outlet. I know I can come here and let it all out, put my feelings on “paper.”  I can truly express how I am feeling whether I actually hit that publish button or not.

Express the sadness of my lost hopes and dreams that come with living with a chronic illness. Use my knowledge from working as an RN, and seemingly countless years of schooling, to help others. Never would I dream of telling others what they should or shouldn’t do when it comes to their medical situation. But knowing that I can provide medical information and knowledge to others makes me feel useful in a time when I so often feel useless.

Living with a chronic illness is hard, that’s no secret. We all have our ups and down. Our good days and bad. But if I have learned anything over the years, it’s that we can’t stay focused on the bad. It is normal to think about all the things you can no longer do, or the dreams that are now gone. It is normal to think about how your life has changed and that your life hasn’t turned out how you imagined. And that’s OK. But you can’t stay focused on that. You have to find a way to turn it around and look at it in a positive light.

You need to think about the good things that have come from the changes. The new friends you have made. The new hobbies you picked up that you never knew you liked, or whatever it is for you. So try and find the positives. Even if they are tiny, they are there.

Getty image via Popmarleo

Originally published: May 12, 2020
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