Patient Story

One year later: Five things I’ve learned from my chronic Illness diagnosis

First things first, I want to be transparent about the fact that I work for the PR agency that represents HealthSparq. Although the company is my client, everything that you are about to read is completely true and is my story from beginning to end.

December 17, 2015, was a day that I will never forget. This was the day that changed my life as I knew it, ultimately for the better. But that’s definitely not how I would have described it at the time. Instead, that day left me asking, “Why me?”

For most of my college experience, I never quite felt normal. Unexplained fatigue, stomach pain and weight loss were just a few of the symptoms I felt pretty much everyday for three years. I was constantly having to come up with excuses as to why I couldn’t make it out on the weekends. Diet after diet, medication after medication, lifestyle change after lifestyle change, I started to become depressed, and I had no plausible explanation as to what was wrong with me, and found nothing that would help.

Bi-Monthly InfusionIn December of 2015 I had reconstructive jaw surgery. The intensive five hour surgery left a large amount of trauma to my body. It left me sicker than I had ever been in my life, almost to the point of death. Little did I know that because of this, I was finally going to receive the answer I had been searching for for the past three years. The illness that was hiding inside of my body for years causing me pain, both physically and mentally, was finally showing itself.

Ultimately after being hospitalized, having two colonoscopies, two blood transfusions and a consultation with a colorectal surgeon, I was diagnosed with Ulcerative Colitis and put on a life-saving drug, which  I will have to receive as an infusion every eight weeks for the rest of my life. It isn’t a cure, but it controls symptoms enough for me to finally be able to live my life “normally.” I started the long, hard journey to recovery, which I am still on today.

It has been one year since my diagnosis and I have gone through many ups and downs. I was able to graduate college on time, get my dream job and move to a new city with my boyfriend, all while battling an invisible and chronic illness. Along the way, I have learned a few things about myself and about the health care system thanks to my disease.

1. Don’t apologize for something you have no control over.

I have noticed, even before my diagnosis, I over apologize for not feeling well. I have often felt like I am inconveniencing people if I’m not feeling well or if I have to miss a day of work or an important event. At the end of the day, I have learned that I have no control over how my body feels from one day to the next, or the number of doctor appointments or procedures I have to endure. I have no control over the fact that this is the card I was dealt, and I am living with a chronic disease that comes with a long list of varying symptoms. That’s not something to apologize for.

2. The health care system is broken.

Over the past year, I have been thrown into the health care system to a degree that I never thought I would be. These days, there isn’t a week that goes by that I don’t have to make some kind of phone call either to my insurer, pharmacist or provider. Whether it’s to discuss how I will be making payments on my $5,000-per-treatment medication (on top of appointment and procedure fees), or enduring insurance-approval headaches, there seems to always be something frustrating and difficult to take care of. Not to mention, all of these doctors and insurance offices are only open 9 a.m – 5 p.m., Monday through Friday, which just happens to be right in the middle of my work week. Backwards? I think so. The amount of work I have had to put in just to maintain some kind of organization to my treatment plan could equal out to another full time job. There has got to be a better model out there, and it’s time to figure it out.

3. Never take your health for granted.

As a 21-year-old at the time of my diagnosis, it never previously occurred to me that at my age, I could be diagnosed with a chronic disease that has no cure and can lead to a handful of other serious conditions. I never thought I would have to spend my free time figuring out how I’m going to pay for a $5,000 medication every eight weeks, while also paying off my student loans. I never thought I would have to battle a disease that is so invisible it makes people second guess the fact that I am actually sick. Your health is the most important thing in the world, and you don’t realize it until you are trapped in a hospital bed being poked and prodded praying that the doctors can save your life.

4. I’m a patient and I deserve to be treated like one.

The amount of disrespect and poor patient experience I have received in doctor’s offices, hospitals and over the phone with insurance companies as a patient, blows my mind. To the health care system, I feel that I am simply a data point in a spreadsheet, and that is clear through the way I have been treated along the way. For something that is so personal and that can determine whether I live or die, you would think I would be treated as if that was the case. I have real concerns, fears and feelings when it comes to my chronic illness, and it is time that the system starts listening to those concerns.

5. Everything happens for a reason.

When I was first diagnosed, I asked myself, “Why me?” I didn’t understand why this was happening to me, and I didn’t understand how my life would ever be “normal” again. However, my diagnosis has been a blessing in disguise. Even though I have to receive an infusion every eight weeks that takes two and a half hours, I am able to eat normally again. I am able to go out with my friends and actually enjoy what we are doing. I’m not in pain every single day. And for that, I will take the two-and-a-half hour sacrifice every eight weeks. I will take the poking and prodding and doctor appointments, and expensive bills. My diagnosis has not only given me my life back, but it has taught me how to be strong, how to be thankful for the amazing opportunities and experiences I have every day.

Some days I’m in pain and I ask myself again, “Why me?” And then I realize why. Because I’m strong enough. Because I can do some good with it. And one year after being diagnosed with Ulcerative Colitis, I have had the most fulfilling year of my life.

Tatiana Skomski
A recent University of Oregon graduate, Tatiana now works as a PR Account Coordinator at Grady Britton in Portland, Oregon. She was diagnosed with Ulcerative Colitis in December of 2015 after years of chronic, undiagnosed pain. She is passionate about animals and storytelling and hopes to make a difference in how the health care industry treats the chronically ill.

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