Always Learning: May is Lupus Awareness Month

Self-care and self-respect are just two elements that Joanna Rentz abides by in her daily fight with lupus. Read on to learn more ways to educate yourself, for you or for friends and family who might need it.

This article comes from our friend, photographer and hero, Joanna Rentz.

I wrote an article a few years ago about what it’s like to live with lupus. It was the first time I publicly opened up to strangers about living with the chronic disease. As someone who appreciates privacy, it was a stretch for me to disclose my “shortcomings,” but I ultimately felt pretty liberated. In light of May being Lupus Awareness Month, I found that article and re-read it. Sometimes I feel awkward reading things I have written in the past (hello high school poems). But revisiting it made me feel not only proud, but like I wanted to continue to get the message out.

People with lupus suffer from a compromised immune system that cannot successfully fight against bacteria, viruses, and other foreign organisms. In normal, healthy immune systems, the body produces a protein known as antibodies, which are released to fight these bad guys. However, in autoimmune afflicted men and women, the immune system produces auto-antibodies, which cannot tell the difference between these invaders and the body’s own healthy tissue. This means the healthy tissue is attacked and destroyed by its own “defense system.” This causes chronic pain, inflammation, and damage to various parts of the body including the organs, skin, joints, and muscles.

I live, and for the past 17 years, have been living with lupus. Though there are times that I feel alone in my disease, I know that I am not. According to the Lupus Foundation of America, 1.5 million Americans live with an autoimmune disease. At least five million people are affected worldwide! The same report concludes that lupus is 90% more common in women than men. So, as a woman with a “pre-existing condition,” it is my privilege to connect, encourage, and hopefully inspire other women who share my circumstances.

I’d like now to revisit three points I shared previously regarding my journey living with lupus.

It is ok to rest, to sit things out, to say no. (The people who care about you will understand.)

Make and keep your appointments with your doctors. (I was bad at this.)

You are not your disease. (You are a strong, capable, able-bodied woman!)

It took me a damn long time to figure these things out and, quite frankly, I still struggle with them today. But in the past three years, I have learned even more.

 

Nourish your body.

It wasn’t until last year that I finally made the commitment to feed my body real, actual, no B.S., healing nourishment. Once I truly learned how to respect my body and its lupus-y needs, I went through an AIP (auto-immune protocol) focused elimination diet. After a few months, I became aware that gluten, dairy, and synthetic/processed foods cause additional stress in my body, and this already chronically inflamed body of mine doesn’t need any more of that. Now, I follow food guidelines that call for vegetables, lean meats, and healthy fats on my plate. I may miss my nightly scoops of chocolate ice cream from time to time, but choosing to take care of my body is well worth the sacrifice.

Understand that you will have people in your life that might not be interested in learning about the disease.

And that’s ok!  I’ve sent numerous articles on lupus and autoimmune diseases to my friends and family over the years, only to get no response. Though I know they love and care about me very much., it can feel like a significant disappointment to learn that your loved ones won’t educate themselves on something that is so deeply connected to who you are. And though the people in your life sometimes don’t come through in the ways you want them to, it doesn’t mean that they care about you any less.

I understand how frustrating this may be. I was diagnosed over 15 years ago, so I have had ample time to process my grievances. If you want and expect your loved ones to educate themselves, go to the doctor’s office with you, advocate for you, and all around support you, tell them! A little honesty goes a long way.

Get the consistently stressful things out of your life!

Dealing with stress is a way of life. Everybody feels it. It’s not going anywhere. But there is a huge difference between the type of stress stirred up by finances and work versus deep-rooted, consistent stress. There have been a few times in my life in which I had to make the tough decision to walk away from friendships and job opportunities due to the high levels of stress they caused. Unfortunately for those with autoimmune diseases, any degree of extra stress can be felt throughout the body, impacting various organs. After long enough, it manifests in ways that can cause extreme health problems. If you are in a stressful relationship or one that may be contributing to health problems, I hope you feel encouraged to leave it behind. That’s baggage you don’t need to be carrying.

Living with an autoimmune disease certainly has its challenges. But staying focused, positive, diligent, and patient will improve your capacity to continue learning about yourself and your disease.

 

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Great post.

I first learned about lupus when I read Portia de Rossi’s book. Thank you for this article. Really taught me more about the chronic disease!

Charmaine Ng | Architecture & Lifestyle Blog
http://charmainenyw.com

Bonnie

I totally understand, so few understand Lupus. I was diagnosed with Discoidal lupus, and now I also have Hashimoto’s. Which came first I don’t know? It’s the which came first, the chicken or the egg. And I have found it’s ok to take a nap, to say no, and to take care of myself. The less stress, the less flare ups. It’s good to be strong, but it’s also ok to cry. Lupus is not an easy disease to understand for others, and that’s ok too. Be who you are, and enjoy your life! Much love!