14 posts tagged “advocacy”

Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

Posted November 9th, 2017 by

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public.

Then came the facemasks. The model, who hails from New Orleans but now lives in Dallas, had to cover her airway with a mask to avoid infection because she was undergoing chemotherapy to treat lupus.

“I was like, ‘Dang it – now people are really looking at me,” she says. But that was a turning point. “It was like God was telling me, ‘I’m going to show you that you’re going to love yourself, even if I have to force you to notice it.'”

We recently talked with Jokiva about her experiences with lupus, finding her voice on social media, exposing her struggles and rising above online trolls.

Jokiva’s lupus diagnosis

Jokiva was 17 and a senior in high school when she started experiencing back pain and a rash, initially thought to be eczema. When the rash didn’t go away with prescription eczema cream and she also started having pain in her knees and legs, she saw multiple doctors and finally a rheumatologist who diagnosed her with lupus.

Lupus is a chronic autoimmune disorder where the immune system attacks healthy cells and causes flare-ups affecting the skin, joints, kidneys, heart and blood cells.

Jokiva has systemic lupus erythematosus (or SLE, the most common form of lupus, which affects many tissues in the body) and discoid lupus (which can cause rashes or skin plaques, especially on the face and scalp). She’s also had lupus nephritis, which attacks the kidneys, and two cases of kidney failure.

Jokiva’s mother also has lupus, which helped point doctors to the correct diagnosis. For many people with lupus, it’s a long road to diagnosis because of the various combination of symptoms people experience, from joint pain and hair loss to high blood pressure and lack of a monthly period (lupus mostly affects women of childbearing age, but men, children and teens can also develop the disorder, according to the Lupus Foundation of America).

“Literally in medical textbooks there’s only one paragraph describing lupus,” Jokiva says. “So when you go to the hospital, these doctors don’t know what’s going on with your body because they don’t even know what lupus is attacking, they don’t know that it is lupus that’s doing this.”

Viral video launches lupus advocacy

In 2016, Jokiva experienced her second kidney failure. Her face was completely swollen and her rashes were the worst they’d ever been. She gained about 60 pounds of fluid, and had blood clots in her lungs and ulcers in her stomach, which caused her to vomit blood.

“My face swelled to the point where I couldn’t breathe,” she says. She received chemotherapy to treat her severe lupus flare, which caused her hair to fall out.

Rather than turning inward, Jokiva decided to post a selfie video on Facebook. Through social media, she had started to connect with other women who were living with lupus or other conditions that affect their skin, hair or appearance (from acne and eczema to cancer requiring chemo).

“I really debated [posting the video], because right then at that moment, my rash was completely bad, all over my face – I was to the point where blood clots were coming out of my lips,” she says. “And because of the fact that people used to look at me in public like I was so disgusting. But I kept having my husband tell me, ‘You’re so beautiful,’ and my mom, she was telling me, ‘Oh forget what anybody else says.'”

“So I was like, let me just post a picture and tell my story to my friends on Facebook and see how they feel,” she says. “I made a video and said, ‘Make sure you guys take your medicine and listen to your doctors because life is too short, because you don’t know what’s gonna happen.’ That first night, the video had 114,000 views. It was just for my Facebook friends but it ended up circulating, they ended up sharing it. That really started my advocacy for lupus, and it turned into Instagram.”

100K strong on Instagram

These days, Jokiva has nearly 100,000 followers on Instagram (@_indianrosee) and she candidly shares everything from throwback photos to present-day selfies from a hospital bed. She aims to tell all women – with lupus or other conditions, or just fans who stumbled upon her page – to love themselves.

“I’m telling them that you can still be comfortable. You can have bald spots on your head because you have to do chemotherapy, but I still want you to know that in that skin that you’re in… You think that you’re not beautiful? You are still beautiful.”

She says that self-love and self-care are especially important for people with lupus. “Some people with lupus or certain diseases don’t understand that, to calm this disease down, you have to put yourself first – that means loving yourself inside and out.” She says she’s fortunate to have a good support system, including a husband who is “perfect.”

Dealing with negativity

Jokiva has faced her share of nasty comments, in-person and online. “Some people thought I had acid thrown on my face, or I had poison ivy. I started getting comments on Instagram like, ‘She should kill herself – she’s ugly as hell.'”

Her response? “Now that I love myself, I don’t care what anybody says about me. I let it roll off my shoulders… I had to build that confidence and it was not easy. It took me a whole year to build that confidence. I had a couple times where I was gonna delete my Instagram but there’s more love than hate – I had to realize that.”

Jokiva says a handful of negative people don’t have the power to cut her off from a community that looks up to her and her message.

“It’s not going to be easy — you’re not going to wake up tomorrow and love yourself,” she says. “When you get that empowerment, that self-love, everyone around you starts to see that and they look past the skin disease, they look past that disease that you’re walking with, anything that you have – they look past that and see the person that you are. You can be who you want to be. Don’t set aside your goals just because something is trying to block your blessing. Just keep pushing, just keep moving forward.”

Jokiva says she’s been inspired by the most caring healthcare professionals who’ve helped her over the years and even shed tears with her. Lupus interrupted her schooling and career plans after high school, but now she’s getting back on track to pursue a career as a nurse or nurse practitioner, and she’s also working on a book of her poems and sketches.

Join PatientsLikeMe to connect with and learn from nearly 29,000 members with SLE, more than 2,000 members with discoid lupus, and 1,700 members with lupus nephritis.

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How to be your best health advocate

Posted October 3rd, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health.

Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you.

For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call the gastroenterologist who suggests more invasive tests, or perhaps refers you to another specialist. You wonder if there are natural or holistic options because you’re hesitant about taking more prescription drugs.

What do you do? Will traditional medicine cure you? Is complementary medicine safe and reliable? Which websites provide credible information? Which doctor is trustworthy?

For me, there was nothing more important than seizing control of my health. It was a priority I couldn’t ignore. Being involved in the decision-making process can reap numerous benefits.

No one knows your body better than you, and no one has more at stake.

Here are a few steps you can take to become your own best health advocate:

Listen to your instincts – Your body is brilliant and gives you clear messages when something is wrong. Make an appointment to see a doctor if you feel something is awry.

Lists – Create a list of your health issues. Include how long you’ve been experiencing the problem, the severity of it, and list any questions you’d like to ask the doctor. Having a list to lean on is both necessary and important.

Research – Medical websites are great resources, but not all sites are reliable. Trustworthy sites should cite an article’s author and the medical credentials for the preparer or reviewer. (Examples of authoritative sites are American Cancer Society, Centers for Disease Control and Prevention, familydoctor.org, HealthyWomen.org, WomenHeart.org, National Institute on Aging, American Diabetes Association, American Stroke Association, National Center for Complementary and Integrative Health, National Multiple Sclerosis Society, National Institutes of Health, PubMed/National Library of Medicine, Mayo Clinic, Medlineplus, and healthfinder.gov.)

Use your voice – Speak up for yourself and insist doctors answer all of your questions. Make sure you give them thorough information and that they are listening. If you’re unhappy with your medical team find another one. Do not allow yourself to be rushed.

Understand how your health insurance plan works.

Review your medical bill for errors. Ask for an explanation if there’s an entry you don’t understand.

Get a second opinion when necessary. Ask for referrals from your doctor or people you trust.

Maintain your own health records. Learn from others who have experienced similar health issues. This can help you emotionally and provides you with the confidence to find what works for you.

Be persistent – If your doctor doesn’t return your call, call again. Insist on getting the answers you need.

Be organized – Never leave an office visit without a follow-up appointment or referrals and labs in hand. Use a written or computerized calendar to keep on top of your schedule. Take advantage of phone apps to keep you organized.

Get answers – If a doctor isn’t providing you with the answers you need find another one. Keep searching until you find what you need. Always keep your eye on the prize of wellness.

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