Hey there! Thank you for taking the time to check out my first blog post. I’m going to apologize in advance for the lengthiness of this post–it is a long one, but hang in there, because there are a lot of things on my mind and it’s finally time for me to share them all. I’m about to share with you a very personal and vulnerable aspect of my life, one that most of you know nothing about. For those of you who know me well, you know this is not easy for me to do. I am typically very careful who I open up to and what I share. But after 27 years, I finally no longer give a damn what other people think, and ultimately I’ve decided that the need to share my story is much greater than my fear of others’ reactions. So here goes. This is a blog focusing on living well with chronic illness.
What do I know about chronic illness?? After all, I’m young (27), active, I work full-time, and judging from my outward appearance and Instagram posts, I probably seem pretty healthy to most people. But this is so far from the truth, which I’ve done my best to hide for the past 4 years. But here’s the reality: Last year I was diagnosed with an autoimmune disease called Ulcerative Colitis, which is similar to Crohn’s Disease. (Read my “About Me” section for more details, and for more information on Ulcerative Colitis, go to http://www.crohnscolitisfoundation.org/.
It all began in November 2012, when I was 22, I suddenly became very sick with what I thought at the time was food poisoning or a stomach virus, only it wouldn’t go away. I lost 20 pounds in 10 days and became so dehydrated that I nearly died before finding myself in the ICU of a California hospital. Several routine tests were done at this time, and doctors ultimately attributed my illness to “some form of food poisoning or infection” and told me, “if it happens again, then we’ll do more tests to find out what is going on.” I hoped against all hope that the doctors were right, and that this was just a fluke, a one-time occurrence and I would be able to go back to my normal, healthy life, but something told me deep down that this was not the case.
About one year later, in November of 2013, I began to once again experience stomach problems. They were not as severe as when I was hospitalized the previous year, but serious enough to have a large impact on my life. I knew something was very wrong, but I refused to see a doctor out of fear of what they would find. About 3 months later, my symptoms gradually resolved and I felt completely healthy for the next year and a half.
Flash forward to April 2015–I had just gotten married, and was on such a high from all the excitement of the wedding and was looking forward to starting my life together with my new husband. The day we returned from our honeymoon in Mexico, I began to experience an all-too-familiar pain in my abdomen, and I knew it was coming back, whatever “it” was. My symptoms progressively got worse over the next 6 months, and I began to feel desperate and hopeless. There was nowhere I could go to escape the relentless pain I was experiencing. I felt like I was barely getting by, between finishing my last term in college, doing an internship, and working nearly 40 hours per week, adding debilitating pain (and other gastrointestinal symptoms that I will spare you the details of) to this was completely overwhelming. Looking back I’m not sure how I managed to function through all of this and hide everything I was experiencing. What can I say, I got really good at faking a smile and replying “I’m good, how are you?” when others would ask. I would force myself to push through work and class, and when I would get home, I would completely crash. The only person who really saw the whole picture was my husband. I didn’t tell anyone the severity of the symptoms I was experiencing, I downplayed it all and told a few friends and family members I was having “stomach problems,” but I knew if I disclosed the severity of what I was experiencing, then I would have to face the reality that something was very wrong. Even when I finally decided to see a doctor in November 2015, I sugar-coated my symptoms to ease her concern and convince her that I really was fine. And, slowly but surely, my symptoms decreased over the next few months, and became manageable, although this time, they never fully went away.
Even though I had been experiencing symptoms off and on for years, I still kept convincing myself that as time went on, things would get better. I didn’t need treatment. I didn’t have a disease. This wasn’t happening to me. Are you kidding me? I was 25 years old for crying out loud. I was young and had always been the picture of health. I kept pretending, until I finally couldn’t pretend any more. In August 0f 2016, my symptoms became severe once more. These “episodes” I had had been experiencing off and on were what I would later come to know as “flare-ups.” Over the next few months, my symptoms became progressively worse, and alarming. And my symptoms weren’t limited to my GI tract either–I was also experiencing night sweats, swollen lymph nodes, fevers, and extreme fatigue. After coming to the realization that I was at the point where I needed to seek help, I went back to the doctor and had tests done.
In November of 2016, (November is apparently a really bad month for me…) I was diagnosed with Ulcerative Colitis. I will never forget sitting in the hospital bed while waiting to hear the results of my test. Then my doctor came in and said, “The tests showed inflammation and ulcerations in your colon. You have Ulcerative Colitis.” What happened next is kind of a blur. I was devastated. My worst fear was confirmed. I knew exactly what Ulcerative Colitis was. I had spent hours and hours researching my symptoms online for the past 4 years and deep down I had known this was I would be told. I knew how serious Ulcerative Colitis and Crohn’s Disease were. I knew that this was not the answer I had been hoping for. This was not a “quick fix” where you can take an antibiotic and be cured. I was well aware of all the terrifying complications that could arise in my future, including side effects of medications, the heightened risk of colon cancer, and the potential for needing surgery down the road. I knew this was going to be an uphill battle from here on out. I also knew there was no cure. As much as I had thought I had mentally prepared myself for this, I realized there is no way to fully prepare yourself until you are sitting there absorbing the words that you’ve just been told.
On one hand, it was a relief to finally have an answer for what I had been enduring for the past 4 years, but on the other hand it was completely earth-shattering. The young and healthy person I had once been was gone forever. I had to come to terms with living with an unpredictable disease for which there was no cure.
I was put on two medications with the goal of reaching and maintaining remission, although most people still experience flare-ups while on medication. The medication has significantly decreased my symptoms, but I still struggle with some symptoms on a daily basis. I have good days and bad days. Unfortunately at this point I don’t feel like I will ever feel “normal” again. I now have a new normal, and I have to accept that.
For the first few days after my diagnosis, I couldn’t bring myself to get out of bed. I felt a deep sadness that I couldn’t explain. All I could do was cry. I felt weak. I should be stronger than this right? I felt like my life was over. I realized later that I was experiencing a grief process. I was grieving the loss of the healthy person I had always been. I was asking God why he let this happen to me. What had I done to deserve this? How would I ever be able to live a full life, to build my career, to fulfill my passion of helping others, to be a good wife and a good mom, if I’m debilitated by a disease? It wasn’t fair.
One of the most difficult parts of this entire journey has been feeling completely alone. Whether it’s having to miss out on events and outings with friends or family because I am feeling sick, having to put on a façade that I feel fine while others around me have no idea of the pain I’m in, or feeling like even your friends and family don’t “get it” or understand what your going through, this disease is no stranger to isolation. All that to say, I do have a few people in my life who have been very supportive through all of this, and for that I am very grateful.
After being diagnosed, I was faced with the decision to either give in to the lie that my life was now over and give up on all the dreams and goals that now seemed so far out of reach, or I could choose, every day, to fight back. I began shifting my focus from what I cannot control to what I can control–how I am taking care of myself and how I react to my circumstances. I’ve made several lifestyle changes (you can read more about this in my “About Me” section) which have given me motivation and a new passion for health and fitness. I may not be able to control this disease, but there are many aspects of my health that I can control, and my goal is to be the healthiest I can be, body, mind, and soul. I want to use this platform I have been given, along with my background in mental health, to provide resources for others who are struggling, a place for positivity and encouragement.
Looking back over the last few years, I barely recognize the person I was before this disease. It has changed me in more ways than I could have imagined. A lot of these changes have been painful and difficult, but I am also able to see positive changes. This disease has made me so much stronger. It has made me a fighter, and has ignited a resilience in me that I didn’t realize I had. I appreciate the “good days” so much more, and I cherish the little things in life, the moments where I’m reminded that life is still be beautiful despite any darkness or pain we might encounter. I am more motivated than ever to accomplish my goals and dreams, and I am more empathetic toward those who suffer. When I work with patients who share stories of their own chronic illness, I can relate to their pain in a way that others cannot. I know that God has a purpose for my pain, even on the days where I struggle to see it. I know that He is using my struggle to create the strength I need to help others. “For we know that God works all things together for the good of those who love Him and are called according to His purpose.” —Romans 8:28. Yes, all things. Not just some things. I know this because I have seen it, over and over again.
I am starting this blog for anyone who is going through a similar situation and is desperately searching for someone to relate to, for encouragement and support. I’m doing this to educate others about Ulcerative Colitis. I’m doing this for those looking for resources to improve their nutrition, fitness, or mental health. I’m also doing this for myself, for my own healing, and to help me express my emotions and process what I’m feeling as I continue on this health journey.
So for anyone who is feeling completely alone because of a chronic illness, I can assure you, you are not alone. I am right there with you. And we will get through this together. ❤