My name is Natasha, I’m 24 years old and I Live in San Francisco, CA. I have been on and off of oral chemo since May of 2021.
I was officially diagnosed with Systemic Lupus Erythematosus in June of 2019. Lupus is an autoimmune disease in which your body attacks it’s own healthy tissues. My initial reaction was that it had to be a mistake. Eventually this “mistake” would change my life better or for worse.
When I first started on oral chemo, it took my body about 3 months to adjust. Anytime I would try to go on a hike or partake in any sort of activity that required me to move my body for an extended period of time, I would either vomit or sit by the toilet until my nausea had passed.
I really didn’t have much of a support system. It’s pretty hard to have one when your illness is almost entirely invisible to outsiders. I relied mostly on my family and my really close friends who are empathetic enough to see past the fact that it is an invisible illness.
Something I wish I knew before starting treatment is that I should never go off of any medication on my own unless my doctor explicitly tells me to do so. At one point, I actually stopped taking oral chemo on my own for a bit. This didn’t end well, because my doctor proceeded to tell me that if I ever do this again, I will die. Not only that is teach me that my illness really is a life-threatening disease whether or not it’s visible, I also had to learn the hard way that doctors sometimes have to be extremely blunt to get their point across.
One of the most frustrating things about being on oral chemo is that suppresses your entire immune system. What this means is that you have limited white blood cells so you become extremely prone to various illnesses and infections.
Over the years, I’ve slowly transitioned over to “clean”, vegan brands. My favorite brand for clean make up is called Ilia. I love how simple it is. Before trying something new, I also tend to just do a quick search on safari to make sure that it won’t cause any sort of bad reaction.
Before starting oral chemo, I would recommend taking the time to understand, just how it impacts your body. Whether you’re taking it for an autoimmune disease or for cancer, it will be a hard transition. The best thing to do is to talk to your doctor and find a nausea medicine that works best for you. Additionally, I also was able to find a really good alopecia treatment from my dermatologist which has helped a lot with hair loss.
Just because you look healthy and happy on the outside, doesn’t mean you aren’t struggling from within. Please don’t underestimate the importance of having a supportive network around you who makes a conscious effort to try to understand your battle.
