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What Happened When I Realized I Could No Longer Deny My Chronic Illness

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The reality of living every day with an illness that will never go away and might possibly get worse and even take your life can be a hard concept to grasp for anyone! Being a young adult in her 30s, I find it even harder to come to terms with the reality that this is my life as a chronically ill woman. I was diagnosed with a rare chronic autoimmune disease exactly two months after my 19th birthday. To say I was completely shocked would be a vast understatement. I was blindsided and it felt like I was stranded on an island with no chance of rescue ever!

It was a lot to deal with, especially since I had just started my second semester of nursing school and was working a full-time job which was around 45 hours a week. I did not have the time nor the patience to be sick (was my mentality at the time). I thought that if I just ignored it and acted like everything was perfectly fine then I could go on with my life just how it was and not have to ever think about my diagnosis again.

The fact that I did not really look ill helped to play on my team in my game if deny and ignore, and I became really good at it too! I played the denial game for probably a solid six months, maybe even a year. If anything would go wrong in my life physically I would blame it on something else entirely. Case in point, about four months into my second school semester I started to have a really hard time getting up every morning to make it to my clinical rotations at the hospital. At times I could barely get out of bed to make it to a 10 a.m. class, I was so completely exhausted. I didn’t know at the time about the fatigue and how it can affect a person living with a chronic illness – remember I was denying and ignoring my way through my first year of illness!

Eventually it got to the point where I had missed so many days of clinical I wasn’t going to be able to pass. So instead of it being an eye-opener and looking at it as a definite cry for help and acceptance, I told myself I wasn’t really interested in being a nurse any longer, dropped the class and dropped out of school altogether!

Looking back on the  situation, honestly it is the biggest regret of my life. Not finishing my degree and dropping out is something I will have to live with for the rest of my life and it definitely haunts me to this day. Why didn’t I go talk to someone and tell them about my diagnosis? Why didn’t I ask for help or find a different solution to my problem? There will always be those questions in my mind about how or if I could have handled it in a different way, where would I be now?

Ironically, after I left school I started to get really sick. Sick enough to where I could no longer deny and ignore the elephant in the room that was my chronic illness. Three years after I left college I became so ill I could no longer work. That was devastating to me. I was 24 years old and having to apply for Social Security Disability, because working a full-time job was way more than I could handle and I was already out on medical leave awaiting surgery on my hand. It felt like I was getting my ass kicked in a fight – blow after blow to my pride, my ego, my sense of self. Who was I if I could no longer work? How was I going to sustain my life and pay my bills? It was too much and once again I was faced with the realization of my diagnosis. It was no longer something I could ignore or deny. I couldn’t sweep all of these life-changing events that were happening to me under the rug and continue along on my merry way. I needed to face my illness head on and basically get my shit together!

The first thing I did was find a new doctor and start taking care of myself. I got all my health issues sorted and knew what I needed to do to maintain a healthy lifestyle for the time being. It hurt my pride, I won’t lie, to have to ask for help and to admit I was doing things in the wrong way, but at that point I knew I needed all of the help and support I could get. Next I hired a lawyer and applied for Social Security Disability. It was a long, very drawn out process and something I had no clue about, so the lawyer walked me through everything and really helped me to understand the process and what I needed to do on my part. It took me about eight months to get approved for Disability, which my lawyer said almost never happens; most people are denied the first time they apply. I was relieved and sad to have gotten approved all at the same time. It was a big weight off of my shoulders knowing I had income coming in to help me pay for my bills and get food etc., but it was also extremely sad for me to have to come to terms with the fact that I was no longer able to work. That was a hard pill to swallow.

Living with a chronic illness is not like waking up one day with a cold. It never goes away! You can’t take some cold medicine and rest for the day and wake up the next day feeling back to yourself again. There is no magic pill to take to cure your symptoms and it’s definitely not something a hot bowl of soup or a cup of tea with honey will cure. When you have a chronic illness your priorities completely change. What you once thought was so important you will most likely find trivial once you’re sick. It changes the way you live your life and the things you can and cannot do. Being chronically ill pushes you to let go of all of the junk in your life and focus on the most important things: your health, family, friends, relationships, doing things that make you happy, living your truth!

When I was first diagnosed I told myself that if I acted like I wasn’t sick then I wouldn’t be, but that isn’t really how it works – and I found out the hard way. However, had I not gone through all of that I don’t think I would be in the space I am today. My life today is 100 percent because of my willingness to accept my illness but not let it define who I am as a person. Yes, I still am a young adult living my life with a chronic illness, but now I do not ignore it or deny that it exists. I talk about it to anyone and everyone. I run an online support group for teens and young adults living with the same illness as myself and I blog about all of my experiences and basically talk about all of the ups, downs, ins, outs and all-arounds of being a young woman living with a rare chronic illness. I set goals and reach for my dreams and I strive to be a better me every day. I choose to live with this disease and not let it take over my life and swallow me up.

I want others like me to know you are not alone and it is hard but you can have a great life and be fulfilled and still live the kind of life you envisioned. Just maybe in a slightly different way. Living with a chronic illness has taught me so much about myself as a person, as a friend, as a daughter, sister, patient, volunteer, advocate and as a 36-year-old woman who just wants to be her best self. I will continue to fight this disease and to fight for my life for as long as I am breathing. I will try my best to help others like myself and to put my best food forward every day because life is precious and definitely worth living – and living beautifully!

Photo by Allef Vinicius on Unsplash

Originally published: September 6, 2018
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