The Sava Wellness Community interview for this month occurs during Autoimmune Disease Awareness Month, in March. In this interview we talk with Vivian (she/they) from USA. Vivian has the autoimmune disease lupus. Vivian speaks to the different, and wide ranging, symptoms of lupus, other concurring conditions like sciatica, and her experiences with body dysmorphia.

Once again, you can follow @chronicloveclub on Instagram as they posted the entire month about Autoimmune Disease Awareness Month and different autoimmune diseases to learn more.

Hello Vivian! It is wonderful to talk with you today. Could you please tell us a little about yourself?

I live in Minneapolis, MN. I have a three year old cat named Milo. He is very attached to me, and overall he takes care of me as much as I take care of him. Even on my worst days he forces me out of bed to go outside when the weather is nice; otherwise he’ll curl up next to me the whole day. I’ve had Milo all three years he’s been alive and seeing his personality just grow is beautiful. He’s very active and vocal when the time calls for it. He can be a jokester at times, which brightens the mood around the house. He’s a beautiful, gentle, big soul that I wish more people got to experience outside of my Instagram. Currently my hobbies include listening to music/dancing, writing, and Facetime with friends. I am trying to get back into knitting again but that’s going to take a lot of energy and patience. I did start a book… so we’ll see where everything takes me this year; I have high spirits that one of my aspirations will come to fruition; God willing!

Do you have a diagnosis for your symptoms? If you have a diagnosis, can you tell us what it is and describe what that means for you? 

My diagnosis includes lupus as the main with left sided sciatica among other diagnoses. Lupus is a chronic autoimmune disease where the immune system attacks everything including healthy cells; meaning no part of the body is left untouched by this illness that causes immense inflammation and pain in the body. Sciatica is pain that travels through the sciatica nerve that goes through the buttocks down each leg and usually happens when there is a herniated disc that puts pressure in the nerves in the back and that’s essentially where the pain starts as well; it mostly impacts one side of the body. 

Honestly, I have not come to terms with any of the diagnoses I have because they’ve all happened one after another without giving me too much time to digest what one means for me or what that could mean for my life overall. I go through the cycles of denial and anger a lot when it comes to the stages of grief. It’s hard and I try my best to just look at the blessings in my life to give me meaning as to what life truly consists of, and that’s lots of love, Grace, and acceptance. One day I’ll come to acceptance, but first I need to work on giving myself more Grace and love. 

Does having a diagnosis help you? 

Yes it does. I cannot imagine having to go years being gaslit as chronically ill individuals are before and even after diagnosis. It helps me to have a diagnosis because then I don’t have to keep wondering or be anxious more than I need to be about what’s happening to my body. It doesn’t solve anything to have a diagnosis yet, it’s a more reassuring feeling to have a final diagnosis though; I just wish there was a cure for lupus and these other chronic illnesses. Yet, I am thankful I have a final diagnosis, I know for some it can take about 3-7 years to get a final diagnosis such as lupus itself. Makes sense though as lupus is also called the “mystery illness” because of how well it can mimic other autoimmune illnesses. 

How long did it take for you to get a diagnosis? 

It took about 3-4 months to get an official diagnosis on my lupus and about 9 months to get a diagnosis on my sciatica. My lupus was very equally systematic because at times I was having difficulties breathing as well as it was presenting physically with water boils, lesions, and swelling, among other symptoms. Hair loss was also another factor that led to my diagnosis. I got diagnosed by dermatology and then rheumatology also had the second final say that it truly was lupus through blood work and communicating with my dermatologist at the time. 

When did you first realize that you had chronic illness and how has your journey been since then? 

I gaslight myself often that I do not have a chronic illness or am disabled in some way, however the first time I realized I was disabled was in October of 2021 when I was in indescribable pain for no reason and couldn’t even walk, let alone stand by myself. That was when I realized I was indeed disabled, and although it was physical for me it doesn’t help that I continue to gaslight myself; it’s not until I’m using my cane to help me be more mobile that I acknowledge that I am disabled. Or when I have intense flare ups is when I know that I’m disabled because they cause a disruption in my days that all I can do is lay down and “rest”. Invisible illnesses such as lupus can make it easier to gaslight yourself on those days you feel better than usual, those days where you accomplish more on your to-do list. Yet, as my pain psychologist and other providers say to me, I need to go easy on myself, just because I am feeling good that day does not mean I have to do everything under the sun. My rebuttal becomes “well, I don’t know when the next time I’ll feel this good again” and they say that’s okay, it still doesn’t mean I have to do everything and push myself to the limit. That helps me acknowledge my invisible disability a bit more that I can’t do it all just because I feel good. Things can wait. I need energy for the following days too to get out of bed at least, if you know what I mean!

How has your experiences of the world changed since your symptoms started? 

My experience in this world has changed dramatically, it’s as if I’m seeing people for who they are for the first time. This world is very cruel and not understanding towards those who are disabled; a lot of individuals when thinking about the perfect utopia, they never include or even think twice to include those who are disabled which shows that we don’t have a place in this world. I was inclusive prior to me becoming disabled, however now I’m even more inclusive where people with disabilities are the first group that I include rather than them being second thoughts because at any point any of us could become disabled. That’s another thing that changed my perspective on the world, that at any given moment, anyone can become disabled whether it’s temporary or long term, it can happen at any time to anyone, so let’s all be kind to one another whenever we can and be inclusive to everyone especially those who are disabled; it makes the world a bit better and easier for those of us that are disabled/chronically ill long term. 

Which of your symptoms do you find the most debilitating and why? 

Is it the skin issues where I feel like my skin is burning alive and there is nothing I can do about it or is it the indescribable pain I experience at times that has pain spasms on top of that? I think the pain takes the cake on the most debilitating. When I am experiencing joint, muscle, and nerve pain all at once it feels like my body is slowly being cut apart and I’m just watching it being cut without having anything I can do about it. It causes me to not be myself, because pain causes people to lose who they are that they become almost angry and I don’t like that it also affects my emotional and mental wellbeing. 

Can you describe what a bad day symptom-wise looks like to you? 

Waking up in excruciating pain, not being able to walk to the bathroom let alone down the stairs. Migraines the whole day that I cannot get comfortable at all to sleep. My skin is also peeling and blistering and it causes an additional burning sensation all over my body that also increases itching because of the blistering, however I cannot scratch those areas. Lastly, is having mouth sores that hurt so bad I can’t even drink water or brush my teeth. Bad symptoms days cause havoc in my brain because what do I target first? Where is the root fire to ease most of these symptoms? It’s quite a battle when you have multiple symptoms that last weeks/months. 

When you have a good symptom day, what do you like to do? 

Literally I just like to stay hydrated and rest even if that means just laying in bed with my ice packs or heating pad. I usually will just listen to music or have a show like ‘The Office’ in the background playing as I surf the interwebs. I like to also just cuddle with my cat when he allows me to, because they have a mind of their own. I also dance around my room to music, that’s kind of my workout because it stretches not only my back but my legs too and arms. This helps with my stretches not being so intense also afterwards. 

What has been the most helpful for you as you have gone through this journey? 

God; He has truly been my rock. I have faith as small as a mustard seed. Each day I pray to God to show me blessings each day especially with my health because most times with lupus it gets very very lonely and difficult. Having the reminder that I’m still blessed to walk even if it’s with a cane, or that my eyes are still functioning because some lupus medications can cause eyesight problems. It’s really the small things, such as seeing my cat Milo get excited to go outside and roll in the grass, that brings me immense joy. So I pray to God to show me blessings each day that I get to enjoy and therefore even though my faith is as small as a mustard seed, God accepts that and shows me why he will never leave me nor forsake me. Deuteronomy 31:8 and Romans 12:12 have really guided me so far in this journey. Daily prayer is the key. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

Chronic illness in general can bring a lot of self-esteem issues that people don’t seem to understand. Body dysmorphia becomes a big factor at certain stages of the illness such as lupus where it can alter your skin that scars show up. I have scars in certain areas of my body that at one point used to be very open and very visible. They brought me down on how I felt about myself because of the placement and visibility. Having uplifting friends who pour lots of love into you, not just physically, but emotionally especially through prayer, that helps the self-esteem escalate. I also suffer from moon face with high doses of prednisone. The weight gain because of the water weight can mess with the brain because sometimes it literally happens overnight. It can cause a feeling of uncomfortableness in the body and lack of self-esteem. During those times I don’t like to go outside too much because of the sudden nature of the moon face and prednisone weight, it can heavily impact your mind, causing body dysmorphia to showcase. It’s a cycle and can be very difficult depending on how severe the illness is in my body during that time. Be kind to yourself, giving yourself grace especially with skin issues, hair loss, and weight gain that is outside of our control, lupus warriors. Having friends who shower you with love, especially in those times, encouraging you yet not dismissing what you are going through can help ease the mind. Support matters.

Thank you Vivian! You can find Vivian on Instagram @nnaifiv