I met this lovely lady at HealTheVoices in April 2019. I had heard about Marisa through the awesome pin I saw saying “Lupus Chick.” My best friend Laura has lupus so I knew I had to learn more about Lupis Chick. I was nervous to meet her at first. Marisa has written two books and I can not even finish one.
After we met, I realized that I had no reason to worry. Marisa is kind, inspiring and courageous.
Here is her story.
I’m Marisa, a journalist, and author who lives in New York with my husband, crazy rescued rat terrier (who we call the rat terrorist) and my mom. I am also the founder of LupusChick, a NY based nonprofit that supports lupus patients and their families.
How has lupus affected your mental health?
I think dealing with a chronic illness, any of them can be hard on one’s mental health. Being sick in itself is frustrating, and not feeling like yourself can be depressing in many ways. Then we also deal with the loss of our independence, possibly our career, friends, or hobbies that we once enjoyed. I have had both great and not so great seasons, with being on chemo definitely the worst of them. I had no idea how chemo affects the brain and wish my doctors would have given me a heads up beforehand. But I made it through thanks to my faith, and support from friends and family.
Why did you decide to write books about Lupus?
With my first book, Lupus: Real Life, Real Patients, Real Talk, I wanted a book full of real-life stories – similar to the Chicken Soup for the Soul series. As a reporter, I am already used to interviewing people, so I did that for this book and compiled stories that each contains a unique journey. My hope was that the reader could at least relate to a few of the stories and know they aren’t alone.
What do you do for pain?
I have a variety of things I do from warm Epson salt baths, OTC pain relievers, hot packs, ice packs, CBD oil, medical marijuana, and muscle/joint rubs and creams. I also try to watch what I eat and I take a lot of different turmeric and other anti-inflammatory supplements.
When did you notice symptoms/get diagnosed?
Looking back, I had very clear symptoms since I was about eight or nine years old, but I didn’t get diagnosed until I was 23! Sadly, this happens a lot in the lupus community with people an average of up to six years before getting an accurate diagnosis.
What lifts you up when you are down?
My husband taught me a long time ago to keep a list – whether mental or actually on paper – of my wins, both big and small so that I can focus on all I have accomplished and all of the wonderful things that have happened to me even with this illness.
Why did you become an advocate?
Going back 17 years ago when I was diagnosed, there was no social media and blogs were just starting to pop up…slowly. I felt very alone and wondered if there was anyone else out there like me. I also didn’t like the fact that no one knew what lupus was! And so, I figured why not step out and use my voice. I had no idea that lupuschick would happen or grow into what it is today.
Who makes you laugh the most?
That is probably a toss-up between my husband and my best friend Karla. Thankfully we all have quirky senses of humor and get each other!
What advice would you give others going through something similar?
I would tell them to take it slow, treat yourself the best you can because your body is going through a lot, and don’t beat yourself up. You didn’t do anything to deserve a chronic illness, and though it may seem overwhelming at times, trust that you will still be able to live out your purpose despite being sick.
How did your family and friends handle it?
For the most part, my family and friends were great, except for a few people here and there who didn’t believe I was sick because I didn’t physically fit their definition of what sick should look like. Those are the people I let go of because the stress it caused wasn’t worth the effect it was having on my mental and physical health.
What advice would you give to family and friends of people struggling?
I would tell them to find their people. It may not be the people closest to you. It may be people you meet at support groups in person in your neighborhood or at an event. It may be people online. Surround yourself with people who understand and are going through the same thing so you can share things with them and feel heard
When did you realize you needed help?
How has it affected your romantic relationships? When I was first diagnosed, dating was tough because I really was ill and couldn’t go out and socialize much, plus men in their 20s did not want to deal with someone who was sick. At least the men I was dating. But then I met Mickey and all of that changed. It took a while, but patience paid off.
What do people say that you wish they didn’t?
Things like “Well you don’t look sick to me” or ” I wish I could stay home all day in my pajamas” are very hurtful. Being sick every day is horrible. Spending the majority of your time in doctors offices, getting tests or treatments, or in the hospital or in bed is awful. We would much rather be out there living life. SO please don’t make these types of remarks to someone chronically ill.
Do you think the health care system is doing enough?
The awareness for lupus is lacking and so are our medical options. Things are slowly improving but unfortunately, lupus patients have been ignored for a long time but our voices together are changing that!
How can people find you?