In case you don’t know, I have an autoimmune disease. My disease is ulcerative colitis. It’s like Crohn’s disease, but only affects my colon. Recently, I have also been diagnosed with psoriasis.
I am on a drug called Inflectra. It’s an intravenous drug that suppresses my immune system to control the symptoms of my disease, which are constant diarrhea, blood in the stool, cramping, urgency to go to the bathroom and many other issues. Every 8 weeks, I drive to Roseville to the Kaiser Oncology Department to have this treatment.
I want to start off by saying that I didn’t choose this disease. There are lots of people out there that think they can cure me because they believe I am eating the wrong food or I am taking actions that caused me to have this. Let me just say that I consider myself to be a healthy person. I have always eaten well, I exercise, do yoga, try not to stress (this is the hardest for me, but I am working on it). I don’t smoke, barely drink alcohol, and have never done drugs other than what’s prescribed to me. I have always believed in being healthy and that food is my best medicine!
Unfortunately, genetics play a role in my health, and there’s absolutely nothing I can do about that. We can not choose our families. I mention this because I feel that maybe the root cause of my autoimmune disease is genetics.
A few years back, I took one of those ancestry tests. (I love family history and just wanted to know more about my people.) As you probably have guessed my ancestry mainly consists of Irish, Scottish and English, but it surprised me to find a good mix of other ethnicities in my results including Jewish.
I want to point out the Jewish aspect because there is a certain type that is more prone to diseases. They are the Ashkenazi Jewish people, which is the ethnicity stated in my ancestry test. Some of you women out there may remember that survey your gynecologists gave you that asked if you were of this certain ethnicity, when you were trying to get pregnant. It’s because if both you and your partner are have these genetics you could pass certain genetic diseases on to your baby, some that are fatal.
My Ashkenazi percentage is small, but great enough to know that one of my great grandparents was a full blood Ashkenazi Jewish. This is important because it plays a significant role in my health. Here’s an excerpt from the 23 and Me blog about Ashkenazi Jewish and their health.
“During the Jewish Diaspora – or migration of Jewish people from the Middle East to other parts of the world – the vast majority of Jewish individuals married and raised families within their faith. Many generations later this means that Ashkenazi Jews can appear more genetically related than they actually are. This genetic isolation has had important implications for health.”
If you want to put it in layman’s terms or make it more understandable, you can call it inbreeding. We all know what inbreeding can do in dogs such as bad hips in German shepherds and diabetes in chocolate labs. For people, it’s the same thing.
“One example is Crohn’s disease. People with Ashkenazi Jewish ancestry are two to four times as likely to develop Crohn’s compared Europeans in general. Although it’s not yet clear why the rates are higher in this population, it’s likely that genetic factors specific to Ashkenazi ancestry play a role. Knowing about your ancestry can teach you about your family’s heritage and your risk for certain conditions. More knowledge means more informed decisions.” - Bethann Hromatka. Ph. D.
The reason that I am giving you background about my health is because I know many of you will play my disease off like it’s my fault and I brought my health issues on myself. Obviously, not the case. Does anyone want to get cancer? No! Why would anyone want any other disease? I can not choose my genetics, nor how my body will react to my environment.
So now I sit here with two autoimmune diseases. Psoriasis, which I know for a fact runs in my family and ulcerative colitis. I live with fear every day about my conditions. I am constantly asking myself if I will make it to see my son live his own life, especially when I am sick. These questions are now amplified with the novel coronavirus. Will I get COVID-19 and how bad will it be for me? Will I make it out the other side if I do get it?
As cases are on the rise in California and across the country, I feel like I am developing agoraphobia. Agoraphobia is basically the fear of going places or leaving home. Because, for people like me, the threat of this virus is real! Again, I think about how bad will it be for me? Will I get the care that I need? Will I live to see the end of this year? You, healthy person reading this, those questions probably never entered your mind when you think about getting sick.
I feel like when I go out I should wear a bright colored shirt that says “I am immunocompromised keep back 6 feet,” just to get people to understand that social distancing will help me and you. It could keep me from getting critically ill and taking up hospital space.
Another one of my biggest fears is that I am a burden. I am a burden on my family because I don’t know if I could hold down a full-time job. I am a burden because I get sick and take longer to recover, even from a cold, which means my husband has to take more time off of work. I am a burden because I can’t always take my son to the park for fear of not having a bathroom readily available. I am a burden to my friends because I can’t go out to eat or drink on the weekends without running to the bathroom a thousand times. And now I fear I am a burden to society during this pandemic because I have a disease that compromises my immune system and everyone has to practice social distancing to save those who are at high risk.
Many of my fears have caused me great anxiety. Still does sometimes. I am only human. But I have learned that fear and anxiety only make my symptoms worse. I know that my fears aren’t who I truly am. I know that I can control my worries. I have to remind myself every day that living with this anxiety and fear is irrational. There’s absolutely nothing I can do, but be happy and follow the guidelines of those smarter than me (doctors, nurses, immunologists, virologists, etc). As you should too.
Ever since my diagnosis, I have developed a lot more empathy for others. Mainly because I do not understand what you or anyone else is going through and because my husband has taught me to be a caring person. He is the most caring individual I know. Honestly, I have it great compared to so many other people.
Since I have been living with my disease, I also noticed that I am not as selfish as I used to be. I also know that I couldn’t have made it through some of my low points without the selflessness of others. It’s why social distancing is so important right now. The situation will only get worse if we don’t take the time to do what society is asking us. You can not get through life without the help of others.
Honestly, I hope no one gets COVID-19 or any other disease in their lifetime and I hope it doesn’t take you getting a disease to realize you should have been more sympathetic to other people. I don’t wish this on anyone.
So don’t be selfish. Even if you are young, you could be asymptomatic and still spread the disease. We have no vaccine for this, no treatments, nothing. Yes, things are being developed, but it’s about a year off until they are widely available. Whereas for the flu, you can get a vaccine, there are antivirals and so many other options to treat it. So I don’t think it’s fair to compare the two. Our best treatment for COVID-19 is to stay away from each other. If you don’t take this seriously the United States will be the next Italy.
So if it helps think of me when you still have that party with friends, when you just can’t be in your home anymore or you are at the grocery store standing too close to the next person in line. If you stand that close to me, I will say something even if there’s not a pandemic, it’s just weird to get that close.
I know that this will be over at some point, and it’s why I am not panicking. Stores that we need are still open. There are very brave and dedicated men and women working amid it exposing their families to it. Society will halt for a little while, but it will flourish once again. Our lives may not be that different when it does.
Most of us will survive, but there are others who won’t and their friends and families will be devastated. Those people will be sorely missed. Help those families, help me, by keeping your distance, by washing your hands and staying in your home during this time. For one moment in your long life, be selfless.