jokiva bellard

When Jokiva Bellard first noticed a red rash on her skin and began experiencing the painful symptoms of lupus, she would go weeks without posting a photo on social media. She felt “ugly,” she said, but now, she’s using her Instagram account to educate others about lupus and show herself (and anyone with a chronic condition), that they are still beautiful.

Under the handle @_indianrosee, Bellard, a 23-year-old originally from New Orleans but now living in Dallas, posts honest photos of herself and the effects of her cutaneous, also known as discoid, lupus — a form of lupus that causes painful red lesions to form on the skin. She was diagnosed with discoid lupus and systemic lupus erythematosus (the most common form of lupus) when she was 18.

See me for who I am ????????

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Bellard told The Mighty that people often don’t realize she has lupus — people have told her she must have eczema or use drugs.

“I used to call my mom and say ‘I’m in Walmart, these people are looking at me.’ At this time my rash was all over my face, completely red, swollen,” Bellard said. “I would start crying because they would walk on the other side of the aisle just to not come my way. The more society judged me off my appearance, my self-esteem sunk.”

During a hospital stay last year, Bellard took a video of herself talking about her condition and encouraging others struggling with lupus to take care of themselves and posted it on her Facebook page. By the next morning, it had 114,000 views, with Bellard receiving dozens of supportive messages.

Lupus is a serious autoimmune disease that attacks every organ in your body and it is not to be taken as a game it is a serious condition that has not been fully determined of be able to control everyone lupus is different.

Posted by Jokiva Rivers on Sunday, March 27, 2016

That huge response motivated her to start posting regularly on Facebook and Instagram and advocating for lupus. She said she never anticipated the reaction she got, but was inspired by all the people who commented and helped her feel beautiful again.

“Love yourself, because if you love yourself in that situation, you’ve made people around you love you even more,” she said. “And people will want to educate themselves — ‘What’s going on with you, baby?’ You educate them.”

Sometimes I cannot cry because there are no tears left , There is no voice no fears kept , Sometimes I look in the mirror and try to understand the image , I say love yourself until you get the vision , I'm running and running but when will I make it , I kept giving and giving and until I could no longer make it. I am confused as broken , I feel like I'm fish in the wave but there is no ocean , No no no no this is not me is it ? And if it is would I be able to fix it ? Playing this movie but I couldn't even afford to buy the ticket , I feel like there's a fence but it's not white or picket , I wanna smile over the moon and glow over the stars , I wanna be that feeling that you get when you seen it all , And be content and feel more loved. I fear that my insecurities will take over and become the best of me , Hopefully I could overcome that and throw it out so you could have the best of me. Rescue me rescue me from this dream , Rescue me so the seen could be unseen , Hiding in a shell until I find what I mean.

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Bellard now has over 93,000 followers on Instagram, who she calls her “family.” Through her photos and advocacy work (she led a “lupus walk” in Virginia earlier this year), she tries to support other warriors and educate people without chronic illnesses. For example, there was the follower who reached out to her for advice after losing her hair to alopecia (“I said embrace your natural beauty,” Bellard said) — and the singer Kehlani, who has a family member with lupus but didn’t know much about it beyond the butterfly rash until Bellard spoke with her.

In fact, Bellard said she’s happy to help others understand more about her condition, which she’s treated with two rounds of chemotherapy and takes 21 pills a day to manage.

“A 6-year-old girl walked up to me and said, ‘You’re dirty.’ And her mom was like, ‘Don’t say that, I’m so sorry.’ I said she doesn’t know,” Bellard said. “I don’t get easily offended by people who don’t know as long as they’re willing to be educated about what is actually going on with me.”

Healing takes time . Might not to start to notice at first but it soon will show ❤️

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What she really wants is to inspire others living with chronic conditions that have affected their appearance and help them realize how beautiful they truly are. She’s currently getting ready to go back to school and plans to publish a book of poems and drawings about her life. Bellard also hopes to continue her advocacy work.

“Every time I run into a woman, I tell her she’s beautiful. I’m like, ‘You know girl, you’re looking nice. For you to have open heart surgery with lupus, girl you’re looking real good.’ ‘Girl, you had a leg amputation, you’re looking good, girl.’ They’re still beautiful even with those problems,” Bellard said. “That’s what I’m trying to get people to understand.”

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Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on or off medication.

Have you ever been approached by someone who knows you have an autoimmune disease and suggests that perhaps if you eat healthier, diet or try certain supplements you will be cured? I have a bit of an issue with this. I actually find it offensive when people suggest I try “this or that” or when other autoimmunies say they have been “cured” of their disease just by diet and exercise alone without knowing my story. I want to address this from my perspective. I feel this is dangerous and it gives others a sense of false hope or that they are not doing something right. It can also make you feel like you have failed or are not trying hard enough.

I have SLE and CNS lupus along with other autoimmune complications. I struggled for over 20 years before being officially diagnosed. Before my lupus took a major toll on my life, I was very active and at my fittest. I ran every morning, lifted weights, loved hiking and worked a full-time, physically demanding job. I ate healthily, took care of my body and I was in the best shape of my life… and this is when lupus hit me the hardest. What did I do wrong? Nothing.

 

I have been on a diet my entire life, and have done everything “right.” As a matter of fact, I spent most of my teenage years on a farm when my symptoms began. Most of my life I lived overseas and ate nothing but “clean” organic whole farm food because it was our way of life. Instead of taking me to the doctor, my mother would treat me at home holistically. Of course, what you eat can affect or aggregate your disease just like many other diseases. But there comes a point when you may not have total control of your disease, by no fault of your own.

Lupus, like many other autoimmune diseases, will do what it wants when it wants, without warning, regardless if you’re doing everything “right.” Lupus is an autoimmune disease caused by a genetic mutation. There is no known cure. Lupus can go into remission, but I think there is a huge misconception between being “cured” and going into “remission.” The definitions have two entirely different meanings. Lupus can range from mild to severe. Lupus can attack major vital organs which can be life-threatening. Every patient and treatment plan is different. No two lupus patients are alike.

I chose a rheumatologist who treats me both holistically and with modern day medicine. I rejected chemo for nearly six months because I did not want to “poison” my body. By the grace of God and that “poison,” I am still alive today. I literally went from taking no medications to over 20 prescriptions and supplements daily just to maintain my day-to-day life.

What may work for some may not work for others. For some, maybe all the person needed was a lifestyle change and their disease went into remission, and that is wonderful. Unfortunately, this is not the case for most of us. Before you make suggestions to an autoimmunie about their lifestyle without knowing their story, please take into consideration how you could impact that person’s life with your words. Having an autoimmune disease is serious and is not to be taken lightly.

I know at one point, being frustrated with myself, I listened to all the bad advice and regretfully got off all my medications. I learned very quickly what a dangerously huge mistake that was. My doctor told me I had two options: I could either take my medications, or allow my disease to progress into my organs. Which at that point, it already had.

So yes, exercise, do what you’re able to do, stay away from trigger foods and take care of your body, but also find yourself a good doctor and find a treatment plan that works for you. No one knows your body better than yourself. Don’t let anyone tell you otherwise and maybe someday, hopefully, we will find a real cure.

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Thinkstock photo via lorenzoantonucci.


Most of the articles I write come from a pretty personal place – often spurred by some moment or incident where I thought, “Gee, someone else may be going through that. Maybe I can help them.”

Well, today I went out during a flare with my cane to get hot wings for my fiancé and the server asked me how sick I was and if there was a cure, all because I had a mobility device. Not having used it for a few weeks, I had forgotten what it felt like to walk around without it and to be able to feel invisible in a crowd of people once again. With a mobility device of any kind, you tend to stand out like a sore thumb, and there are always those people who love to ask ignorant questions, well-intentioned though they usually are.

woman standing outside with her walker

I remember being with a wheelchair attendant at the airport once who told me about how she had a friend with lupus who had just died at the age of 30. I sat there unable to move (being wheeled about by her) listening to this thinking, by god, this is what I have to fear and think about next when I can’t sleep at night. People aren’t just asking about the cane anymore, but are essentially telling me I might die.

I’ve had people ask when I will die, too, and tell me they know for a fact my life expectancy is shorter because I have lupus. This of course spurred an all nighter of agonizing WebMD-ing and Google searches, which made not only myself but my fiancé (and dog too, probably) upset over the “what ifs” and the “how do they know” and the “will this/won’t this happen,” which nobody truly knows the answer to.

I am not an expert at handling insensitive passerby or people in general. I am an expert, probably just like you, at meeting them on the street and being unsure of what to say that will be a kind balance of standing up for myself and my life as well as answering their questions in a polite but firm way.

I have learned the best thing to do is be kind and to rise above it. Tell them about a successful venture or thing you have recently done or are working on, a talent you have, something you love to spend your time doing – something outside of your illness. Use the moment as an opportunity to teach that person that people can be more than their illness. Try to remember this may be the first time that person has encountered a person who is ill, like yourself, and they genuinely don’t know a better way of showing their concern than being how they are in that moment.

Someone I respect very much always says to look at a person’s intent, not their actions – so, unless someone is openly making fun of you, it is best to err on the side that they didn’t want to upset you and had your best interest at heart. I know this doesn’t make it easier to take things less personally, but that part is on you (and me) to handle, just like it is to learn to handle the stranger who has a million questions. If you learn some strategies, it may become easier in time.

That same person also tells me to have “answers on deck” for ignorant people who ask me these questions, so I can exit quickly and feel in control of the situation, and not so taken aback and upset or thrown by their remarks as I am if I haven’t thought briefly about what to say if someone were to ask. Sometimes I’ll get asked a few times in the same day – and people who have an illness or mobility device know how that can make you feel if you are’t prepared or ready to deal with it. It can really ruin your day!

woman posing with her cane which has skulls on it

My answers? Depends what they ask. Sometimes they ask how old I was when I got sick. That really hurts. Sometimes I tell them, sometimes I don’t. I typically tend to say I have lupus. Some people will then ask what it is or if there is a cure, and I say I am doing well, but there isn’t. Still, I am positive and will be fine, thanks for asking. Then I change the subject in hopes they will give up. I change the subject to how I am busy writing and just came in to order x or y, and how was their day? And then they usually say, “Oh, how lovely!”

You are in control at that point, and can keep changing the subject or evading answering questions or leave the area. You also don’t have to answer any questions at any point from when they started asking. “No” is a full sentence. Remember that. Have answers prepared for “not answering” at all if you don’t want to.

It can be a real downer to run into people who ask or probe or have their own opinion about your illness (and how to treat it), but remembering they just want to help is what’s important. I try to remember too that people who are nasty (the really nasty ones), like bullies in high school, are most often mean because something hurts inside themselves. Aside from this, people who are just asking but doing it the wrong way are doing the best they can, and it is up to us to teach them and the rest of the world about us and our illness if we want to change their opinion.

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I’m starting to forget what sleep feels like. So what is there to do at 4 a.m.? Write. Often when a conversation starts with someone about being sick, they ask, “Are you OK talking about this?” and my answer is always the same… absolutely. I’ve been questioned a great deal about why I talk about my illnesses as frequently as I do. I’ve been asked, “Why don’t I keep it to myself more? This one person I know, you’d never know they were sick.” Well, good for them! That’s great they keep it private. And I totally understand wanting to do that. But I’d like to go another route and I hope it’s respected.

– For one, it’s a coping mechanism for me. Talking about it makes it easier to accept and makes it not as petrifying as it can be sometimes.

– If I’m not going to talk about it, who is? I strive to spread awareness so that if I tell someone about it, they’ll remember and tell someone else.

– Is there such a thing as silent fundraising? I don’t think so.

 

I know there are many people out there with illnesses – whether they’re autoimmune, chronic or temporary. For me, I have three illnesses that will be with me until a cure is found. I’ve had lupus for six years now, fibromyalgia for a year and a half and POTS for six months. I’ve absolutely had these illnesses for longer, but this is when I was diagnosed. I know I haven’t gone into much detail about my fibro or POTS symptoms (or what POTS even is), but that’s for another night of not sleeping.

After a memory of a book from a friend followed by a night of being unable to sleep, I got to thinking. I always believe and try to tell people to own their story. Everyone has a story, illness or not. But own it. Don’t be ashamed. Be vulnerable. If you’re judged, those people don’t belong in your life. Be you…bravely.

People can be whoever they want on social media. They can take 20 pictures of something until they find the perfect shot. They can be having a horrible day but post a picture or video that makes it look like everything is fine. That’s what cell phones, iPads and computers have done – they’ve become a mask people can hide behind to portray their world however they please. I try to be as authentic as possible, which we can all deep down agree (whether you like to admit it or not) is a great deal harder than we’d like it to be.

I have two Instagram accounts…one I started when Instagram became popular years ago, and another I started about a year and a half ago when my health started to decline. I decided this one would show everything there is to show about being sick. I’d give lupus, fibromyalgia and POTS a face for all to see. I still struggle daily wondering if people believe me or if they “get it.” I don’t post all pictures of the bad days – of me laying in bed all day or on the bathroom floor. Me missing parties and vacations and work. I’ll post pictures of me at these events, but what you’re not seeing is me in the hotel 90 percent of the vacation or sleeping the days away.

I talk about whatever is going on as much as possible and pair my words with an appropriate image, but pictures are often more memorable than words. When pictures show something, it can be perceived differently by everyone or even misconstrued. What can I do about that? I can keep sharing. I can keep writing. I can fight. I can talk. I can educate. I can spread awareness. Fighting is my life right now…every single day. So whether it’s my highest highs or my lowest lows, I’m here to share it all. Because if you don’t see it all, how are you going to truly understand what life is like being sick?

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Thinkstock photo via Ingram Publishing.


These pictures were taken of me after I got lupus, and they are probably some of the best pictures of me (in my opinion) that have ever been taken (thanks, Melissa Alcena). I look sexier here than I ever did before I got sick and that’s because I learned a lot more about being sexy and what that means after I got sick than I ever knew before having lupus.

People often assume that being sick means you can’t be sexy (weird, right?). We all know this myth about being sexy and sick isn’t true, but sometimes it is up to us to teach others the opposite. This means we may have to work twice as hard to prove ourselves, especially if and when we already have being sick to deal with.

woman dressed in black and laughing
Photo credit: Melissa Alcena

I have lots of stories about how being sick has at one time or the other affected things in the bedroom, and about how I wish it didn’t, or how that made me feel.

I also have lots of stories about how it made the sex that happened when it happened 10 times better – and about how I had to learn to feel and be sexy in a different way than I had been before, because sometimes my skills or abilities would be entirely different, so I would literally have to exude it and cast a confidence I’d never before had (and so had to develop).

I can also count on more than both hands how many times I have wanted to have sex and then haven’t been able to because I was in too much pain, and then felt like less of a woman since I couldn’t carry out the act.

I basically had to relearn how to be sexy while being sick, and how to be with my partner in a way that worked with my new illness. And in that time I figured out it isn’t so much about the stuff I thought it was about as it is about confidence and loving yourself in the face of stuff that makes you not want to.

I’ve learned that being sexy and sick at the same time is a challenge, but I think that makes people all the more sexy. It shows gumption and strength – stuff I think makes people sexy to begin with.

So. Here are some ways to look and feel sexy while being sick at the same time – because that balance can be hard at times.

1. It is a battle, but we all know that when you feel you look good, you feel better about yourself. Following that rule of thumb, it makes sense to always try to look and feel your best. Put the extra effort – if you can – into getting dresses and clothes that will make you feel nice, be easy to wear and work with your illness so you always look put-together with little effort.

2. Take the extra time to adapt a beauty routine that works for you and is easy to complete. On days that are really bad, sure, skip these steps, but get into the habit of facial wipes, hair brushing, moisturizing, etc., because these simple things which cut down on a lot of energy expenditure will really make it much easier for you to feel confident and good about yourself. Pick things that are simple and cut down on time but also work with your energy level. There is often a lot of downtime when you are sick and if you want, you can use some of that time to look up some YouTube videos and learn a quick and easy hairstyle that you can do or a partner can help you do in the mornings that will make you feel confident. When I was in flares, my partner offered to learn to braid my hair for me and that made me feel much better and happier – even just that he had offered. He would oftentimes paint my nails and help me do things I was too sick to do when in a flare or not up to going to get done at times. It really made me feel better, and you will never know unless you ask a friend or partner for their help. Make it fun, have a makeover day.

3. Glow from within. Treat yourself with kindness and you will exude radiance and joy.

woman in a bikini in a pool at night
Photo credit: Melissa Alcena

4. Treat yourself (nails, etc). If you are really unwell right now, this may sound like a far off idea, but it is important to aim for. This is paramount to do when you have a good day because then you will be all dolled up and not have to worry about hair and nails during bad days and still feel super beautiful. It will make you feel like your good days are extra special, too.

5. Make pleasure a priority. (This may mean putting a predominant focus on managing your pain, etc. so you can actually have a moment where you feel something that isn’t pain.)

6. Do research so you can accomplish the above goal in a way that fits you and your illness and makes you feel confident and comfortable in carrying it out. (Ex. Are there positions that would be better if you have sore joints? Or, if you have a dry mouth, what can be done to help with that?)

7. Accept that people still see you as spectacular and they probably don’t focus on your illness as a defining characteristic – they just see you for you. We (the ones with illness) may not always see ourselves this way, and assume others don’t either. This can make you feel unsexy and undesirable, so it is crucial to recognize that the people who are interested and love us genuinely often see only our best parts (they may also see the not-best parts, but they love those parts too). That’s what sexiness is about: owning all the parts and being fearless. Know your worth, and exude that fact.

8. Talk to your doctors about sex. Get advice on how to maximize the efficacy of your pain control with pain medications and physiotherapy to benefit you and your sex life. (Ex. How does the timing or scheduling of your pain meds align with when you try to have sex? Is this a factor for you?)

9. Involve your partner in a conversation (no matter how awkward it is) about your needs regarding your health (if there are any) and how to adapt or make sex easier to make you feel more comfortable in the moment when asking for things. For example, some illnesses or medications can cause dry mouth and this can make some sexual circumstances hard. It is important to speak up and discuss this beforehand rather than get caught in the moment. Talk about solutions or do your research to get advice on how to handle it.

10. Find new ways to be sexy and new things that make you feel sexy and channel your energy into developing those areas of your life. Hone your brain! Smart is sexy. Develop a new hobby. There are lots of ways to be sexy. It doesn’t have to be six-inch heels (which are hard to wear with a walker and joint pain!).

11. If you have them, glam up your assistive walking devices or tools to make you feel more confident and empowered.

12. Remember who you were before your illness, and what it feels like to be empowered by feeling sexy and loving yourself. That person and that feeling aren’t gone just because your abilities have changed or because you do things differently now. You just have to relearn the keys to that feeling and approach it differently now, just like you everything else you relearned in life post-illness. Doing that is much easier than never feeling it again.

woman in a bikini pulling on her shirt
Photo credit: Melissa Alcena

13. Above everything else, remember to love yourself no matter what and to be confident in what you do. Even if it is silly or ridiculous or clumsy, do it confidently and carry it out with grace. This confidence will attract people to you – when you doubt yourself it sends the opposite signal and others pick up on that. (Everyone doubts themselves, but try to do it few and far between, and when you do, remember everyone does it.)

14. Don’t be ashamed. Do what you need to do to take care of yourself, and be fearless about it. Have a sense of humor about what’s going on – try to lighten things up a bit if you can, but it isn’t necessary. Whatever you do, do it with confidence and do not ever be ashamed of what you need to do for your health and happiness. Let yourself have days where you aren’t the sexiest, and don’t feel bad about it. Wear sweats and leggings, don’t do your hair and don’t apologize for it. Find beauty in the moments where you don’t feel your best and love yourself anyway – you don’t need to be “on” all the time.

15. Don’t stress so much! Don’t stress about being sick. Try to laugh more. Watch a comedian on Netflix. Finally have those friends over. Get out a board game, order that pizza, and make whatever effort you can to help yourself feel beautiful. All of these things make a difference. Don’t let being sick run your life: let yourself be who you were before, and learn how to be sick and sexy at the same time.

16. Make it work for you. Where needed, do the research, and put in the work to adapt it and the necessary changes to your life.

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Every time I go for an appointment with my renal doctor, I’m reminded I’m an anomaly. Before seeing my specialist, I jump on the scales in the waiting room, the procedure for all patients. But as I unlace my shoes and step up to be weighed, the seniors in the room all wear the same expression of bewilderment and disbelief that someone so young could have such serious kidney problems.

Unfortunately, this isn’t an uncommon experience for me. Too often, I’m reminded I shouldn’t have the problems I do at my age. In some ways, I feel like I’m 21 on the outside and 60+ internally.

 

I don’t have the issues of your average 20-something, and I’m reminded of that time and time again. Doctors, nurses and medical professionals never fail to mention I’m at least 30 years younger than their usual patients, and it’s always accompanied by a look of pity I can’t bear.

My priorities often aren’t the same as my friends’. Sure, I still worry about university assignments and exams while trying to maintain a healthy work-life balance, but before I can even think about any of that, I’m thinking about my kidneys and my health.

Medication, exercise and doctor appointments are at the very top of my priority list. Everything else is secondary, as it has to be. I don’t have the option not to think about my health, as being lax would have serious repercussions.

A lot of people don’t understand the full extent of my condition. They don’t understand how much medication it takes to stop my body from destroying itself, how many nights I stay awake unable to achieve the basic human function of sleep, or how many mornings I’m forced to oversleep only to wake up and wish I hadn’t.

I’ve become a young adult with a mental maturity far beyond my years. Being diagnosed as chronically ill forced me to realize I’m nowhere close to invincible and nothing should ever be taken for granted — especially health or time.

I’ve thought about organ donation or donating my body to science, and while they’re not typically the kinds of subjects you’d be thinking about at my age, even though I probably shouldn’t be, I’ve become incredibly comfortable with it all.

In my early 20s, I’ve faced my mortality and had to acknowledge death as a very real part of life. I’ve had to grow up much faster than I should have and that leaves me with an anger I can’t resolve. There are years I won’t get back and moments I won’t ever experience because of lupus. At 21, I’m so much older than I ever thought I would be, and while it’s not always a bad thing, there’s always a part of me that would do anything to have the feeling of being carefree that I always assume was meant to accompany my youth.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today. 

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Thinkstock photo via Grinevich.

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