That Moment When I Tell My OkCupid Date About My Lupus


Dating in your 20s is difficult. Now let’s try adding the stresses of dealing with dating during the “cyber age” of Tinder, OkCupid, Grindr and every other badly named dating app out there. It’s fair to say that we haven’t really perfected the process of finding the “One” or even the “One for right now.” I’m going through the process of trying to find my soulmate in an endless mobile view of shirtless pics and guys only looking for “friends with benefits.” I remember thinking in my younger years about what my dating life would be like when I moved to the big city. I kept seeing visions of me coming down the stairs of my newly renovated brownstone in my funky-unique date night outfit, greeted by my Anderson Cooper lookalike. Yes, I’m a Carrie.

Lately my “Sex and the City” dating life has more accurately resembled an episode of “The Walking Dead:” Me, in a crowded bar with guys endlessly staring open mouthed at their cell phones like zombies instead of actually engaging with the people around them. Let’s be honest, it blows. But let’s say for instance, you have found the “One.” Everything is going great and you’re ready to make a commitment and change that Facebook status. There’s only one problem: you haven’t told them you have lupus.

I’ve struggled with this a lot. I’ve gotten close to potential partners and everything is going swimmingly until I tell them about my chronic illness. It’s usually greeted with the phrases:

“Wow, you don’t look sick.”

“I know someone who has that.”

“Oh, um, can I catch it?”

Here’s the thing — as much as I wanted to be angry at them for saying these things, I can’t. They might actually have no clue how to address someone with my condition, and don’t know how to react. I’ve had years upon years of getting used to the idea of having lupus and it’s not something I always think about. That poor adorable guy across from me who just received this information, he’s trying to process everything I just told him.

The first thing I usually tell the guy is to not look anything up on the internet. I made the mistake of doing this when I was diagnosed and was bombarded with awful images and stories of death, despair and butterfly rashes. The internet is a scary place.

The only thing I can do is to simply answer their questions and try to make them understand my illness. Yes, I am not my diagnosis, but lupus is a huge part of my life and is something I will deal with forever, so if my guy can’t handle the thought of that, then I don’t blame him for leaving. I might be sad or angry at them at first, but then I think about the physical, emotional and mental strength I had to acquire over the years as I dealt with the ups and downs of lupus. Also, people are generally afraid of things they don’t understand. Simply put: Some people just aren’t strong enough to deal. And that’s OK. I wouldn’t want to be with someone who can’t deal with my inability to walk sometimes or my constantly being tired due to fatigue. As difficult as it is to want to shut down when my partner asks me about my illness, I have to remember: They are asking because they care and they want to know more. And that’s a great thing.

I’m very quick to be defensive about my illness. If I want to find my soulmate, I have to be willing to take down those walls I put up when I was diagnosed. It’s a learning process, but the goal for all of us out there swiping is to find someone who accepts us (and our illness) for who we are.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? Check out our Submit a Story page for more about our submission guidelines.




When Extreme FOMO Sets In Due to My Illness


I waited for a couple of weeks to write this because I couldn’t seem to find inspiration and I have been extremely busy opening a new musical workshop in Washington, D.C. Then, I was reminded that the D.C. Pride Festival is this weekend. As an out gay man, I’m super excited to participate this year. But as someone with lupus, I’m very wary of the damage I can do to my body when I’m out in the sun dancing in my tightest tank top and shortest shorts (don’t judge). Let’s be honest, calling out of work because I partied too hard at Pride isn’t really something I can do. As I browse Facebook and look at all the events I will be missing, extreme fear of missing out (FOMO) sets in. This isn’t the first time I’ve encountered FOMO, and it won’t be the last.

Since I was diagnosed with lupus, I have missed out on so many social gatherings. From best friend’s weddings to birthdays to Tinder dates, I’ve flaked out on a lot. We all know that stress can be a trigger for flare-ups, so if you’re stressing out about FOMO, you may be self-inflicting unwanted stress on your body. You have to let this go.  

I wish I had a clear answer on how to get rid of those feelings of guilt or stress when you have to cancel your plans, but each situation is different. I think informing your friends and loved ones of your condition is super important. I didn’t clue in on this until I kept canceling on a guy I was dating. He thought I wasn’t interested (I was) because he didn’t know that I was dealing with lupus. With new people, I know it’s a very difficult and personal thing to reveal, but if you see a future friendship or relationship with this person, I recommend telling them. People are surprisingly compassionate. This made things much easier when my friends were planning outings. Some would even ask for my input to make sure that I was comfortable.

I think FOMO is initially linked to anxiety. We’re afraid that something monumental is happening in our circle of friends and we’re going to miss it if we don’t go. Chances are… nothing is happening. You might be missing out on the occasional brunch gossip, or your friend drunkenly hitting on the bartender at happy hour, but that’s it. For me, my FOMO is pretty much linked to my ego. I can’t stand the fact that my friends are having an awesome without me and how dare they post it on social media. This is where I have to take a large pill of “Get Over Yourself” and just deal. Logging off social media is a big help. You might be amazed how much better you feel after cutting off your phone for the day and doing something productive. The amount of time I waste scrolling through Facebook or Instagram is shameful, so if I miss a few hours of it, I think I’ll be OK.

I think of FOMO as that one mean girl who was always “fake nice” to you in high school. A “frenemy,” if you will. The only way to not give it power is to ignore it and focus on what actually makes you happy. Yes, you will miss out. But think of how much time you’re wasting on FOMO… let’s call her “Becky with the good hair.”

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.


When I Kept Saying 'But I Used to Be Able to...' After I Got Sick


A friend recently asked me what my “spirit animal” would be. When I raised my eyebrow, she added, “I’m serious, everyone has one!” I laughed, as a sloth immediately came to mind; like these creatures, I love to sleep, swimming is my favorite pastime and for the most part, I am a loner. But even with all of these similarities, I quickly answered, “Most likely a cat; it seems I have nine lives. “

It’s a fact — I am a death cheater. There was the time in my 20s when I almost died after being run over by a pickup truck traveling 50 mph as I walked to my car. And then there was the lupus diagnosis and subsequent blood clots, mini-strokes, brain aneurysm and other medical absurdities that seem to come along with this chronic illness. Through the grace of God, an incredible support system and a feisty personality (what can I say, I’m Italian), it seems I’ve been able to make a comeback again and again and again.

This is a trait I have noticed in many people who are dealing with a chronic illness. As I get older and meet more people, I am always intrigued by the situations and traumatic experiences people can overcome, standing stronger once the storm has passed. I’ve also noticed that for many of us who have encountered these earth-shattering events, life seems to separate into the time “before” the incident and life “after” the incident.

In 2007, several years after my diagnosis and tango with the bumper of a Ford Ranger, I married an incredible man. For the first few years after our wedding, I experienced lupus flares that can only be described as a crap-storm of ridiculous incidences. It was so bad at one point the hospital literally sent me home because nothing else could be done. My life involved mostly sleeping and having a nurse come to our home to help me eat and bathe.

I was frustrated and angry, but when you are ill you do not have a lot of extra energy and resources to handle much. I wanted to enjoy life with my husband. And so began a season where much of my spoken word involved the following phrase: “But I used to be able to (insert activity, lifestyle, passion, etc.).” And with this, the mental damage began. Through the help of my super smart (and quite handsome husband), I came to the realization that I had never fully grieved and mourned the loss of my old life.

Have you ever felt like you were in a hopeless situation because of your illness? Were you angry and maybe resentful of the loss of your health, the ability to be independent? Have you ever felt angry at your own body because you feel like it turned on you for no apparent reason? I felt all of this and I knew not confronting it and dealing with it was going to ruin me. 

The loss of health can interrupt so many parts of life — career, finances, intimacy, hopes, and self-esteem. We can feel frustration, guilt (because we have to rely on others) and depression. Add a little pride to the mix, and refusal to reach out for any help, and you have a disaster slowly unfolding.

Eventually, my husband coined a term in our house, “The Town of Used To.” Anytime I would compare my present day with old life, he would roll his eyes and say (with a laugh), “Oh crap, we are going back there again?” We can actually joke about it now. I couldn’t see it then, but visiting this “town” was anything but a vacation.

Have you ever traveled to “The Town of Used To?” I noticed the more time I spent in this hellhole, the more discontentment and pain I felt for the things that were involuntarily taken away from me. One dictionary I researched describes discontentment as a “restless desire or craving for something one does not have.” My craving for my old health and freedom was leaving me feeling bitter and discouraged.

Living with a chronic illness is hard enough. Eventually, I made a commitment to myself to not bring in any additional despair and dismay into the mix. For lack of a better phrase, I had to give myself a swift kick in the ass and made a calculated and intentional effort to be grateful and cognizant of the positive things that were happening. It wasn’t easy. I failed a million times, but I felt if I didn’t make this change, I’d up end living in a state of constant dissatisfaction, one foot in my present world and the other in a time that will never be again.

It has taken me years, but I can see the fruits of my intentional efforts and a shift in my way of thinking. Today I am so grateful to be alive, to have an incredible career, and to be surrounded by a great support system. I’m lucky to have an adoring mom, a patient husband and a rescue dog, who for some reason thinks I am the next best thing to Snausages.

woman getting treatment at doctor with husband
Marisa and her husband at her treatment.

Starting a gratitude journal was a life-changer for me. Yours doesn’t have to be fancy, just a notepad will do. Jot down at least two things you are grateful for each day. It could be something as simple as “I had a little extra time today and took a 20-minute nap,” or something more profound such as, “I woke up today — I was given another chance to change the world!”

My journal, prayer and support helped me retrain my brain and put a permanent restriction on visits to the Town of Used To. If your mental passport is almost maxed out with visits to this dump, I’d love for us to both commit to each other to not travel there anymore. There is a great big world out there with much better destinations to explore!

As for the spirit animal shenanigans, I eventually had to research the concept — which seemed completely absurd to me at the time. Turns out, the cat is believed to represent patience, a spirit of courage, a desire for adventure and healing oneself from the inside out. Sounds like the majority of chronic illness warriors I meet on a regular basis! They are some of most courageous people I’ve ever seen.

And so, here’s to my next adventure, one far away from the hospital and most definitely not in the Town of Used To.

Maybe I will see you there…

Follow this journey on Lupus Chick.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.


Why It's OK to be Chronically Selfish in Your 20s


When I was in grad school I felt guilty about missing family functions, anniversaries, birthdays and holiday gatherings. I was often plagued with the thoughts that I would miss out on precious moments my nieces and nephews were having, afraid my family would look at me differently. That was until my father gave me this advice: “Be as selfish as you can in your 20s. Do everything you want, date who you want, take time for yourself, because once you get married and have kids, it’s no longer about you.”

I feel like this especially applies to those who are dealing with a chronic illness in their 20s. It was really bad once I started to make friends in D.C. The bevy of activities are endless, which is great, but that also means I’m going to be one tired millennial at the end of the day. In our 20s, we seemed to be obsessed with the idea of having it all. And why not? We’re starting to make headway at our first “big boy” jobs and have a great social life all while trying to date and make relationships work. It’s a lot, I’m not crying about it; it’s just overwhelming if you think about it.

When I’m feeling overwhelmed, I tend to go back to my father’s advice on being selfish. What he was essentially telling me was to practice “self-care.” As someone living with lupus, I now know what triggers flareups in my body. My main trigger is stress. It’s amazing how a stressful day can turn into not being able to walk the next morning. I’m learning to avoid things I know are going to stress me out. So If I can’t make it to my work happy hour because I know drinking plus getting home late on a weekday will make the rest of my week pure hell… I’m not going to go. Also, that hiking trip that has the potential to cause so many flareups I’m afraid to count them…sorry, probably not going to participate. I’m also not going to let the stress of F.O.M.O (Fear Of Missing Out) get to me as I’m having a “Batman” marathon at my apartment instead of going salsa dancing (which I actually love to do).

Give yourself a break. Do some breathing exercises, meditate, go for a walk, do some yoga. The one thing I can do to counteract some of the damage done to my body is sweating out the stress at the gym. It takes a Red Bull and an entire Britney Spears album for me to get motivated to go, but I always feel better after. Do something for yourself and don’t feel guilty about it. It’s a balance and struggle, but your body will thank you. You can’t completely avoid stress, but you can control how it affects your life and your illness.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.


26 Ways People With Lupus Describe the Disease to Someone Who Doesn’t 'Get' It


Lupus is a chronic autoimmune disease where the immune system creates antibodies that attack the body’s own tissues. It affects an estimated 1.5 million Americans. No two cases of lupus are the same. Symptoms can range from intense fatigue and exhaustion, joint pain, memory problems, skin rashes, kidney problems, lung inflammation, depression and sensitivity to the sun.

In honor of May being National Lupus Awareness Month, The Mighty partnered with S.L.E. Lupus and the Lupus Research Institute to raise awareness. We asked Facebook communities here and here: How would you describe lupus to someone who doesn’t know what it is?

These are their responses:

1. “Lupus is losing yourself. Lupus is taking it day by day. Lupus is a thief of joy and overall health. Lupus is dealing with side effects head to toe. Lupus is finding yourself wishing for the days before ‘you were sick.’ Lupus is a mystery.” — Alyssa G.

2. “Lupus is my evil twin, looking at a broken mirror.” — Lisa C.

3. “It makes you so tired, as if you are lugging around something that weighs a ton and you have to push yourself to move.” — Heather F.

4. “Lupus is a test of strength. It is learning how to live each day no matter the consequences. Lupus does not understand I need to get out of bed; it challenges you to sit up, put your feet on the floor and stand. Some days you win, some days you lose, but you never give up!” — Jennifer P.

5. “Lupus is a like a gag gift. The outside of the package looks good, but the inside of the package, which no one can see, is actually pretty ugly.” — Bernadette S.

6. “Lupus is like a chameleon. It changes daily, sometimes hourly. You never know what symptoms you will wake up with.” — Melanie M.

7. “I told my girlfriend that my body’s cleaning lady (my immune system)… started to rip the couches (my kidneys) to shreds instead making sure the trash was getting taken out (toxins when I go potty).” — Paige D.

8. “Lupus gives you strength in ways you never thought you had but takes away that strength at any possible moment.” — Valerie T.

9. “One day, I feel so great I could hug strangers. The next day I mess myself up and can’t get out of bed.” — Amanda C.

10. “Imagine the time you had the flu. Now triple the exhaustion, the pain, the sick feeling. Imagine never feeling better.” — Shonda D.

11. “I’ve heard lupus called a roller coaster ride, an invisible illness, being allergic to yourself, a medical mystery, the Great Imitator, a civil war, the ‘Cruel Mystery’ and a daily roulette game… just by my doctors and nurses alone. If my doctors feel this way, imagine how you feel going through it every day.” — Courtney A.

12. “Lupus is life-changing — and not in the good way.” — Dena D.

13.  “Explaining to someone what it’s like to have this debilitating disease is hard. We all look normal on the outside, but on the inside we’re screaming to get out of the body that is wracked daily with pain, fevers and fatigue.” — Tammy K.

14. “A long winding road with many turns and bumps.” — Nicole L.

15. “As a child, my father said I was born tired. I will never forget that. I fatigued quicker than any of my friends, have had stomach aches and vomiting since childhood. But carried on. As I got older symptoms worsened, became more complex, involved more organs. Finally a diagnosis… I’m not crazy after all.” — Cynthia L.

16. “My body thinks I myself am a virus. By doing its job in protecting me, it is in fact destroying me.”  — Amanda T.

17. “Lupus is a daily reminder that you can’t take life for granted.” — Demi L.

18. “It is like standing on the edge of a cliff. You never know if the strong wind of pain, fatigue, infection, weight gain, swelling, memory loss, etc., will blow you off the cliff and land you in the hospital.” — Wanda M.

19. “Lupus is unpredictable. It shows up whenever it wants and wherever it wants. It tries to destroy you everywhere. You only have a little time to do things before you can’t do them anymore. My hands are hurting badly from writing this…” — Sara G.

20. “Sometimes the simplest way to describe it is that I am allergic to myself.” — Tracey K.

21. “It’s watching your hair fall from your scalp and knowing there’s nothing you can do about it. It’s remembering to take medication daily. It’s staying in on days/nights to heal while your friends/family are out having a good time. It’s wondering whether or not your body will be strong enough to do things like have children. It’s hoping that the loved ones in your life will support and understand. Lupus, it’s my life.” — Amanda G.

22.“Lupus is a civil war inside your body. Both sides mean well, but they are both hurting each other in an effort to save the one thing that they are making suffer, you.” — Kelli B.

23. “I would describe lupus as a terrorist that takes your body hostage and has no mercy.” — Kristy W.

24. “It is isolating, painful, nauseating, draining, confusing, hurtful, frustrating, depressing, and overwhelming.” — Ashley S.

25. “Lupus is like a box of chocolates… you never know what you’re gonna get!” — Jane T.

26. “Lupus is hair loss, swollen hands, joint pains, but on the other side it is a good friend who teaches you to love life more than ever and who teaches you to fight against all the negativity.” — Bengu L.

How would you describe lupus to someone who’s unfamiliar with it? Let us know in the comments below.


When Strangers Overwhelmed Me After I Admitted I Need Help for My Lupus


While my disease is doing better each day and I am feeling better with every treatment, there are still some things that will never go away. I will never be “cured” in the traditional sense. I’ve tried so many things and so many doctors and been poked and prodded and second opinions? Yeah, I’ve got 20. 

After denial came anger. Because being a single mom, wasn’t hard enough? Having two teenage boys that are like emotional tornadoes wasn’t hard enough? Having a career and moving to the mountains wasn’t hard enough? The fact that those were all “choices” I’ve made and lupus wasn’t? Yeah, that realization really pissed me off.

I own the mistakes I’ve made. I don’t just own them, I reference them in times of despair to remind myself how far I’ve come, and yet still have to go. I’ve managed to turn those moments into the best times of my life. Every one of those choices above that made my life hard, made me cry and laugh sometimes in the same breath, made me who I am today. Strong, independent, intelligent, seeking new adventures and doing the things people said couldn’t be done!

But lupus didn’t make me feel any of those things. It made me feel weak. Needy. Incapable of taking care of myself and poorly educated on the needs of my own body… my own mind… and my own heart. I realized I was blaming myself, pissed at myself really, for the one thing I didn’t have any control over. I refused to ask for help or admit that I needed help. I didn’t want to be “that girl.”

Finally I had the meltdown that had been building up for years. Building up since that day I was diagnosed. I realized I did in fact need help. I realized I couldn’t do this, everything I am and aspire to be, on my own. I didn’t know the whats or the whos, I just knew it was finally OK to say it out loud. I have lupus. And dammit if I couldn’t change it, I would own it.

Now I am not a religious person, but I do believe in the power of suggestion, of positive and negative energy, and that we all have a path we are on in this life and we learn through the suffering of ourselves and those around us. We become humbled. We seek and in return give love and comfort to those who ask.

I looked up at the stars, then I closed my eyes to meditate, and I asked for strength.

Then I got on my community “Buy Nothing” Facebook page and I posted: “In search of: a wheelchair.”

To say I was overwhelmed would be an understatement. “Speechless” doesn’t even give it justice. Offers of wheelchairs, places to go for used ones, lupus support groups, offers to pay the co-pay by complete strangers! It turned out someone I already knew had one in her garage, of which I am graciously and humbly accepting. But I didn’t know because I never even asked.

The next weekend the boys and I went to San Francisco and I was invited to speak to budding songwriters. We went to dinner, and I went outside to get some fresh air. I was greeted by sounds of a saxophone player and it took me back to a time, October 2007 I believe, when I had been standing in the same spot, listening to a saxophone player.

So I asked him “How long have you been here, on this corner?” And he said, “Well, it’s been about 20 years. I play here here every night but Wednesdays. Gotta let the younger guys have a turn.”

“I was here almost 10 years ago, and you played Miles Davis for me and I gave you a $50 bill,” I said.

He said, “And then we sat down right there and shared a smoke. I never forget a 50.” 

woman standing with saxophone player on the street
Bridget and the saxophone player.

And I never laughed so hard. He asked how my boys were, and he commented on my cane, then I don’t know why, but we hugged like old friends. We talked for another 20 minutes and when I turned to leave, he grabbed my head, kissed the top and began to pray. He asked that the boys and I be given strength. Which is when of course I completely lost it. I began to sob, almost hysterically. But he held me tighter, and prayed harder. And I accepted it. Not because my faith was the same as his, very far from it in fact, but because our spirituality was.

We are all human. We all have to ask for help and if we are any good at being human, we will all give someone help at some point, too.

I don’t know who I thought “that girl” was, but I know who she is now.

You see finally, after anger came acceptance. Acceptance that while yes, I do have this disease, equally, if not more important, was that I am not alone in this fight. Having lupus has made me realize that the person I truly aim to be is not one who is jaded and made “hard” by something completely out of my control. It is to accept that maybe out of control is OK. Maybe being someone who treasures receiving love as much as giving it is even better. Being a lupie warrior, just like being a mother, will never be easy. And maybe that’s the best part.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*


Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.