Living with lupus: The silent battle between autoimmune diseases and holding unto the woman within
Lupus advocate and social media influencer sheds light on how to overcome your disease and live in your best self
This is one of those interviews that had me speechless and in awe at how strong, courageous, and beautiful womanhood is. I know people that have lupus and I have experienced a close loss of someone with an autoimmune disease. I can only wish that I was more aware of the pain, hurt, and strength my loved one had the year prior to her passing. In this interview, Jokiva Bellard shares the beauty, pain, and complete life change associated with an autoimmune disease, in specific Lupus. Check it out below:
- What is lupus? Lupus is an autoimmune disease that makes the body attack itself. Antigens and white blood cells will assist a virus with infecting your body instead of fighting against the virus. It is as if if you have a cold, rather than contracting the same cold, I can catch pneumonia. In my opinion, there is not enough research or education on this disease available to those in the medical field. I was diagnosed with lupus based on trial and error.
- Are there any known causes or set symptoms for lupus? I know that lupus is genetic. My mother, grandfather, and several other relatives all have lupus. Lupus symptoms can vary and effect each person differently. I went from no allergies, to having allergic reactions to multiple Rx’s. I know someone with lupus that needed heart surgery, another person that had her leg amputated. It is hard to pinpoint and diagnose lupus because so many problems can occur due to it. I also know someone who has to use a breathing machine because of lupus, someone else who was in a coma for 6 months, and a friend who went into remission because of her pregnancy. It just all depends on your body.
- How was the diagnosis and treatment process for you? I was diagnosed my senior year of high school and the experience went from a skin rash to fatal in a matter of weeks. I suddenly could not hold my bowel movements; I was sweating profusely, swelling, and having trouble breathing. Soon after I had my first kidney failure and my entire life changed. It took almost 2 months and a dozen exams before I received my diagnosis. I remember having to sit days in the dark because doctors thought I was allergic to ultra violet (UV) lights. After I was diagnosed, I started different forms of chemotherapy. I am now sensitive to sunlight, my skin breaks out from the chemo, my diet is low sodium and gluten free, and if it is too hot outside or I am too stressed I can have a flare-up. At first, I tried to continue my normal life, go after my dreams, and put lupus on the back burner. I wanted to be a registered nurse (RN) but the stress of school caused flare-ups and a minor car accident caused me to have a second kidney failure.
- Is there a lot of resources or support available for people with lupus? NO! People, society, schools, etc. they do not take lupus serious. This is an autoimmune disease as deadly as cancer but the public is uneducated on the severity of lupus. I was told by my school that lupus was not that serious when I had to miss class, come in late, etc. I had to hire a lawyer to fight for insurance and disability assistance because the state of Louisiana did not deem lupus as a serious medical condition. The judge during my case was surprised that I had kidney failures, chemotherapy, etc. from lupus. When I first opened up to social media and even now, people dragged me because of my skin breakouts. It hurt. There were people that commented “kill yourself”, “her skin is beat up”, etc. because of their ignorance with my condition.
- You have such a positive outlook on life even while fighting for your health. Was it always easy to accept your condition? I am able to keep a positive outlook because my husband sees my pain and goes thru the process with me. He keeps me positive by uplifting me with, “Babe your beautiful” comments even when I have a flare-up. Even in all my ugliness, he makes me feel beautiful. Even though I receive hate from social media, I also get a lot of encouragement. It pushes me to be positive and set the example for women who are going thru similar situations.
- What advice would you give to women who are diagnosed with lupus or other conditions that alter their physical appearance? I want you to know that you are beautiful regardless; do not let society make you close out yourself. Life does not wait for anybody; you have to take control of your happiness and love yourself first. You cannot give up on yourself and you have to keep faith that your diagnosis will not control who you are. Also, surround yourself with people that understand that your condition comes first. Your health comes first and they are to be the anchors that help you thru whatever treatment or help you need. Women are more susceptible to getting lupus so your partner has to be ready to accept the responsibility of helping you stay on top of your health. If they cannot do that, than you do not need to be with them.
- What advice would you give to mothers in supporting their children thru the diagnosis of lupus or a similar disease? Be honest and blunt about the condition. Remind your child that people are uneducated about their disease so they should take lightly what other people say. Help them embrace, love, and accept who they are and that this condition is a part of them. Do not be ashamed to educate people or be with your child even if they have a flare-up or physical ailment because of their condition.
- Any beauty or make up tips? Before you put on makeup, use vitamin E, coconut oil, or any other natural moisturizer. Do not use perfume or any other scented concoctions; I do not care how good they smell. Make sure your foundation includes sunscreen, if you do not have anything protecting your skin you will get sunburn and bleed. That can than become infected and create dips in your skin even after it heals. Also, make sure that you really wash your make up off before you go to sleep and moisturize your skin again. If you get a flare-up, you can also bathe and use oatmeal and vitamin E to help control it.
- Does diet affect your skin too? YES! Try to change your diet to a low sodium and gluten free diet; it will decrease your flare-ups. You do not have to necessarily go vegan but stay away from processed food, canned food and change the way you season your meats. You can use Mrs. Dash seasonings, garlic and onion powder, oregano, etc. seasonings that are fresh and natural. You can also clean your colon with a natural detox up to 2 times a week. I grind kale, spinach, banana, and mango for my detox and it reduces my chances of a flare-up.
- What advice would you give to someone who does not have lupus?Listen to the person who has lupus and be empathetic. Do not judge a book by its cover, a lupus patient may never show you that they are in pain. Make us feel like we are not being judged and that we are accepted in the World. We are just as sick as someone who has cancer, we are not contagious and will not harm you even with a flare-up… you are more harm to us than we are to you.