It’s no secret that I’ve struggled to put into words what I’m feeling and fought hard to understand what has been causing my depression, anxiety, and general unhappiness. It’s easy to say that I’ve experienced great trauma and this reaction is expected but far more difficult to navigate the emotions evoked by that trauma. It took many months, even years, before I realized that what I wanted most is to take back control of my life. It was a big step to finally admit to myself that Crohn’s will always be a part of my life and I must make the difficult decisions in life that will allow me to be the person I want to be while living chronic. Unfortunately, I still live with depression and anxiety despite those revelations and digging deep to understand how to move forward is proving to be my most difficult challenge. “Take back my life!” is a noble battle cry but I realize how difficult taking back my life can be without a supportive team. I’ve been a fiercely independent person since birth. I don’t like to ask for help and “I can do it myself” has been my mantra for years. My anxiety is rooted in the fact that I can no longer do anything by myself. I count on medications, medical teams, family support, and insurance to work together to keep me living. What am I most anxious about right now? Medical teams lacking the empathy to put my needs and wants first and to make my health a priority. I’ve been angry about living 19 months with a severe drug reaction without a diagnosis. I’m really angry when I think of all the times I could not live my life and a doctor shrugged and just slowly moved to the next treatment option. I’m extremely angry when I think of the times a doctor did nothing at all. When I started this blog and podcast, I recognized that I could not allow anger to dictate my emotions. I’ve still dealt with extreme anxiety and anger despite my best efforts to make this journey a positive one. Why am I still angry? Because I’m anxious. Why am I anxious? Because if my Crohn’s disease flares again, I can’t positive attitude my way out of it. I must depend on doctors to find a new treatment plan, and quickly. If I start having another reaction to my current drug, I depend on doctors to be able to identify that quickly. Unfortunately, my experiences have proven that those doctors can be incompetent, uncaring, slow, and even combative. In 2013, I was finally diagnosed with Crohn’s disease after dealing with symptoms for over 6 years. Those symptoms had progressively gotten worse to the point that I could not even get to work. I was given no support nor was I provided advice on how to live with a chronic disease. We did start a treatment plan that helped me to at least be able to change how I scheduled my days to allow myself mornings to deal with my Crohn’s symptoms. I did not reach remission, but I at least had a doctor that cared. In 2017, my doctor was promoted to a supervisory role, and I lost that care and empathy. I also lost my ability to just reschedule my life to accommodate Crohn’s and my disease had become so severe that I spent the better part of 2017 in extreme pain, unable to move, and largely unable to leave my home unless it was a trip to the hospital. The loss of my empathetic and caring doctor meant that I had to learn to deal with the medical care that I’ve come to know these past 6 years. I was ignored, pushed off for months, put on waiting lists, and even bumped out of appointments for more important patients-namely Vice President Pence in once incident. I finally changed providers and was put on weekly Humira shots that finally got me out of the house in 2018 but I would learn that living my life was not anyone’s priority. I started having the drug reaction symptoms in 2020 and had to wait as many as 3 months between doctor appointments. Not being able to walk was not considered an emergency, it was just another appointment for these doctors. Of course, I now know that I have permanent damage because of that lack of care and concern but the worst this damage isn’t the nerve damage, it’s my faith and trust in medical institutions. I don’t believe I’ll ever regain trust in medical providers. Believe it or not, my care only got worse after the reaction, and it took me months to find a team to properly care for me. I had nearly given up on all medical care entirely after I finally got an appointment with a new doctor and even though I had severe symptoms after discontinuing Humira, he just never put me on a new treatment plan. Despite 10 years of Crohn’s disease, he stopped treatment. This was the point I was ready to use the Dignitas membership (empathy in a world of people who think just staying alive is good enough) and end my life. My husband convinced me to try the Veterans Affairs Hospital and they identified the Crohn’s inflammation and put me on the Stelara that would finally get me into symptom free remission for the first time in 10 years. I’m thankful for the VA hospital but I’m not convinced I won’t ever have to live through that hell again. I want to be optimistic, but I know that flares can happen, and my entire life is in the hands of medical professionals who have shown me a complete lack of care and empathy. Who wouldn’t be anxious? I know that doctors are overworked but what happened to compassion? I’m not a bad day at work. I’m a human being. Why is it acceptable for doctors to ignore my complete lack of ability to live my life and only be concerned when that life is about to end? My inability to go to work or do the things I love may not be an emergency to the doctor but it’s certainly an emergency to me. I’ve lost 10 years of my life, and no one seems to care. They’ve kept me alive and it appears that is the medical profession’s only objective. We need to make empathy our battle cry. There are no guarantees that my health won’t become worse. I need a guarantee that a doctor will make my life a priority though. Living my life. Not just staying alive.
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