Why Me? - The start of my 'Autoimmune Who?' Facebook Page
Updated: Sep 19, 2019
Why me? This question has evolved in meaning for me. Up until a little less than a year ago, I would sit on the bathroom floor, hysterical, asking what I did to deserve being diagnosed with such a horrible disease. A disease that I wouldn’t wish upon anyone. I suffered from severe anxiety every time I left my home, even if it was for a short walk. What if someone saw me get sick? What if I was labeled as a disease instead of a human? Would people think differently of me if they knew? Does anyone else my age even understand what I’m going through? Can anyone ever love someone who is such a liability? Why can’t I just be myself and experience the world? These were all questions that popped into my head almost every day. I temporarily lost myself to a disease that does not define me or anyone.
You may be wondering what lead to this question of "why me?". In the summer of 2017 I was diagnosed with Ulcerative Colitis. If you aren’t familiar, Ulcerative Colitis is a type of autoimmune disease. Did you know that 1 in 5 people suffer from autoimmune disease, yet it seems like so many people don’t know anything about them? Do you know how lonely it is to not feel like you have a safe place to talk about such a huge part of your life with someone who you feel like truly understands? My guess is that many people with an autoimmune disease know this feeling.
I am creating this page for that exact reason. This page is a safe place for people to share their stories, talk about things they are struggling with, and ask questions they don’t need to be ashamed or embarrassed of. We are all here to support you and if you are here and have an autoimmune disease, that already means you are so much stronger than you even know because you are looking for solutions and putting your health into your own hands. We were given this disease because God knew we were strong enough to fight it.
I mentioned above that the question "Why me?" has changed for me. This has changed for me, because now having UC is one of the things I am most thankful for. Yes, it has completely changed my life – but in some of the best ways. I wake up with the intentions of making the most out of every day and focus on doing things that are going to make ME happy. I don’t take my health for granted anymore, which gives me so much more to be thankful for. I am constantly looking to better myself in new ways. I have become so much stronger and knowledgeable. I have taught loved ones what other people out there are going through. I push myself out of my comfort zone and I go on that hike or boat where there are no bathrooms because I know I will have fun. I treat my body like a precious gift – because it is one! I eat to fuel my body and feel healthy – not to look a certain way. It has increased my need of constantly wanting to give back and to help others. It has taught me that you never know what people are going through from the outside – give them the benefit of the doubt. I am creating this page to help others who want to heal themselves and so we can build community, spread awareness, and stick together through the tough times.
Like I mentioned above, I was diagnosed with UC in the summer of 2017. Even though I wasn’t diagnosed until the summer of 2017, I had been experiencing symptoms for about a year. I was seeing a GI doctor who just wouldn’t take me seriously - why do doctors not take woman crying as seriously as they do men? That’s some serious BS. I was an aerobics instructor at the time and started having to take breaks during my classes because I was so dizzy, or I would run out mid-class because I had to use the bathroom. Every night after going out (and not going out) I would find myself full on sprint to the bathroom, which was right outside my bedroom door. My doctor kept telling me I was dehydrated. When I graduated, it got to the point where I would get dizzy and light headed getting out of bed, or standing up from the couch. I was probably going to the bathroom around 20 times per day at that point and not retaining any food or nutrients. Even if I didn’t eat anything my body was still expelling so much waste – it didn’t make any sense to me!
My doctor just keep telling me I had IBS and to drink more water but I knew in my heart that something was seriously wrong. I ended up going to my primary doctor who is an absolute SAINT and has saved both my mom and I’s life (more to come on that with her permission) and it turns out my hemoglobin was a 5.9. For those of you who aren’t familiar with what hemoglobin is “Hemoglobin (Hb or Hgb) is a protein in red blood cells that carries oxygen throughout the body.” Low hemoglobin is anything less than 12 for women according to the Mayo Clinic, and mine was a 5.9. My doctor said it was the lowest she had ever seen and ordered an immediate blood transfusion for me and said that I shouldn’t even be driving a car or be out of bed! Can you imagine what would have happened if I kept listening to my original GI doctor??
I immediately transferred to a different GI clinic and got a colonoscopy and EGD. This was my second colonoscopy, I did have one at my first GI doctor and I am not sure why it was inconclusive. I was immediately diagnosed with Pancolitis which means that my whole entire colon was covered with bleeding ulcers (which explains the low hemoglobin). When I got diagnosed, it was a feeling of relief. I thought things were going to get better immediately since I had a diagnosis, right? Things actually got worse.
The thing I struggled with the most was that you couldn’t tell from the outside – I didn’t look sick and became a professional at hiding and disguising my UC. I struggled with telling my coworkers I couldn’t come into work that day because I woke up extremely sick or was in the hospital when they had just seen me looking completely fine the day before. Autoimmune disease isn’t something that is visible from the outside majority of the time. I had to miss days of work: to go into the emergency room because it felt like my appendix was bursting (it was really my UC), I ended up getting pneumonia in the middle of the summer because of my low immune system due to the immunosuppressant’s I was on, which led to even more days off because the antibiotics caused a flare, which led to yet another blood transfusion. It just seemed like one thing after the other and whenever I was in a flare, the doctors just stuck me on prednisone which helped short term, but never long term. Prednisone is a different story in itself and I feel for anyone who has to go on it. I used to cry every time my doctor even mentioned it as an option because it made my face and body blow up, caused acne, and just made me feel miserable.
I was hopeless and started saying no to all plans that involved doing anything I thought was fun because I was terrified to leave my house. One thing that I don’t think a lot of people realize or acknowledge, is that autoimmune diseases are really an emotional battle just as much, if not even more, than a physical one. I let UC define me, enough though underneath it all I was still me. I wanted to be myself again so bad and after doctor appointment after doctor appointment, I decided I needed to take matters into my own hands. I wasn’t going to let UC define me, I wanted to define it. I needed to listen to my gut (ironic right?).
For me, listening to my gut meant trying different elimination diets, seeing healers, detox baths, meditation, getting off and switching up a couple medications based on my own research, and really just taking time for myself and putting myself first. I now eat pretty clean and there is probably not one item in my pantry or fridge where I haven’t read the label multiple times. That being said, I am not perfect. I do go out with friends and family every once in awhile and don’t stick to all my ‘guidelines’. When I don’t stick to my guidelines, I don’t stress out about it – sense stress is a huge flare trigger for me – instead, I remember that I am 24 years old and life is short, I need to have balance and want to live my life to the absolute fullest and never regret not doing something I really want to do. When I have a slip, I wake up the next morning and have my celery juice and fruit smoothie and carry on. I am going to write a post more on what I eat and what vitamins and medications I am on, but I wanted to focus this post more so on my journey. The biggest thing to remember with your journey, is that healing isn’t going to happen overnight – it is a process and you most likely won’t see results right away. I still have days that aren’t the greatest, but when I look back to where I was a year ago today, all the progress I have made is absolutely amazing. For this next part of my journey, I am hoping to build a safe community where people who suffer from autoimmune diseases can all help each other, stick together, and spread awareness. I want you all to realize how wonderful, strong, and beautiful (or handsome!) you all are. Having an autoimmune disease does not define you, so please join me as we take these lemons that were handed to us and make lemonade.