themighty logo

What I've Been Learning Since My Lupus Diagnosis

It’s been three long years. Three long years of worrying about my health. Thirty-six months wondering if I’ll be able to have more children. Over 1095 days with the constant fear that it’s going to become too much for my friends and family to handle. I’ve learned a lot in this time, not only about myself, but so much more. I could go on for days about living with chronic illness, but I’m going to keep it short. Here are the three things I’ve learned during my three years of chronic illness.

1. Chronic illness is one of the hardest things to understand unless you’ve dealt with it yourself.

Some of the people closest to me still don’t truly get it. They probably never will. I have no doubts that some people think I’m faking it. It’s hard to believe that I look healthy, but I’m in pain daily. It’s hard to fully grasp that I’m so sick. Heck, sometimes it’s even difficult for me to believe.

Yes, I look healthy.

Yes, I can have a life outside of lupus.

Yes, I do more than I should.

My secret is behind closed doors. It’s when my husband doesn’t question me sleeping for two days after a rough week. It’s the multiple infections I currently have and the fact my eyesight is disappearing quickly. We want another baby, but my body keeps miscarrying. The pharmacist probably knows my husband by name as he is there so often picking up a new medication. A new prescription that we hope will stop my lupus from destroying my body or that will relieve some of my pain. These are the things I don’t show. Just because I keep it quiet, doesn’t mean it’s not there. It’s there, trust me. If you don’t get it, I don’t blame you. It’s tough to comprehend. Just know it sucks and I wouldn’t wish it on my worst enemy.

A photo collage with text that reads, "What I've Learned in three years."

2. It does get better.

With all the stress, even in the chaos that I’m dealing with at the moment, I know it gets better. It’s pretty much the only thing keeping me alive at some points. Four days ago I couldn’t get off the couch without tears, and today I went on a two mile walk with my son. Like I’ve said before, I can adapt to my new normal.

If you’re dealing with your new diagnosis, just remember this one point. It took about six months to feel the upward slope, but it will happen. You will find the medications or therapies that will help you feel like a person again. There are incredible groups to vent to if you need it. I know I did, and I didn’t want to always vent to my husband. Join a group, do your research, and find a doctor who listens.

3. It’s OK to ask for help.

This is my worst nightmare most days. I’m working on letting people help me even now. You have to reach a point and acknowledge that you can’t do it all alone. Whether it be dinner, cleaning, or larger things.

I’ve had to ask my husband to help me walk to the bathroom. Years ago, My husband couldn’t work as I needed so much assistance to even take care of myself. It left us in a tight spot. We had to ask to live with family until we found out what was wrong with me. I’ve asked my family to watch my son during bad flares.

Now that I know why I’m sick, I take the help less often. I know that it’s OK to ask for the aid if I do. If you’re still scared to ask, think of a loved one in your same spot. What would do want them to do?

While it feels like I’ve been chronically ill for way more than three years, I know I have barely scratched the surface of my journey. Three years ago today, I thought my biggest worry was the pulmonary embolisms that landed me in the ER. I wouldn’t have seen myself here today. It’s not what I would have picked. I’m sure anyone would choose a healthy life over having life-changing medical issues. That being said, I’m happy I’ve met so many great people. The lessons I’ve learned are irreplaceable. Three years down, with the rest of my ever-changing life to go.

This story was originally published on The Bohemian Housewife.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: evdakovka