Psyche logo

When a Diagnosis Hits You Like a Freight Train

Fighting Back Against Chronic Illness

By Bethany Atkinson-PegorsPublished 6 years ago 6 min read
Like

It was March of 2013 when I received the news, "You have primary sclerosing cholangitis." I had been experiencing intense abdominal pain the previous few weeks, had to call in sick for work multiple times, and had so many procedures and tests done to confirm the diagnosis. All my husband and I knew at the time was that PSC was a progressive liver disease that would one day most likely require a liver transplant (which I received in May 2016).

After I was diagnosed, we spent a couple days at the Mayo Clinic in Rochester, MN for more tests and procedures. My ulcerative colitis had progressed at the same time, so in the midst of figuring out what my new diagnosis meant, we were finding out if I had colon cancer, pre-cancer, or if I needed to have my colon removed. Needless to say, it was an incredibly intense time. After going to the Mayo Clinic a few times, it was decided that just a couple months after hearing my diagnosis, I would be having a subtotal colectomy (most of my colon removed, except the last 12 inches).

There really wasn't a lot of time to process everything that was happening. I had to quit my job, my husband was working two jobs, and we were in the process of moving from Minnesota to Colorado to be closer to my family. I didn't want to believe I had a second diagnosis. I tried to see my life in the same way as it had been beforehand, but then I kept needing procedures, tests, and stents put in my liver bile ducts to keep them open so bile wouldn't get backed up in my system. Over the course of two and a half years, the number of hospital visits I've needed had grown exponentially, and it felt like there was no end in sight.

Because of all this, processing had to come in the midst of the tragedy. My husband and I haven't felt like we've really had a moment just to breathe and not worry about my health or our finances since that fateful day in 2013. My diagnosis and this disease has felt like being hit by a freight train for four years, and it just won't stop.

Being diagnosed with a serious illness at an age where you can remember what life used to be like is the absolute worst. You grieve for freedoms and certain joys being lost, feel intense anger towards the pain of the moment, and fear greatly for the unknown future. I can't begin to tell you how many times I've cried out to God, wondering when I'll get to be my adventurous, fun-loving self again, only to know it may never happen. I received a liver transplant in 2016 and hoped it would dramatically change my life, but my newly diagnosed Crohn’s became active not long after the surgery. There’s also always the possibility that something else may pop up, or I could be diagnosed again with my new liver (yes, though rare, that could actually happen).

If you've been diagnosed with an illness either recently or after childhood, then you know exactly what I have felt. You know the pain of learning to live a new life based on your illness, and you know the difficulty of trying to explain to your loved ones why you're not quite the same person you used to be. You know the feelings of confusion, wondering, "If I had just done things differently, would I have never gotten this disease?"

And then there’s the ever-present question:

"Why?"

Others may tell you that asking that question is selfish because bad things happen to people all over the world every single day, but that kind of thinking just diminishes the pain you feel from your suffering. You feel scared, alone, angry, confused, broken, terrified, etc., and all those emotions are completely and utterly valid. No matter what illness you have been diagnosed with, it affects you in a way no one else will ever understand. No one can ever tell you what to think or how to feel, especially if they have no context for knowing what you're going through.

Let yourself feel those dark and scary emotions. We lie to ourselves when we attempt to hide away our feelings so people don't know we're struggling. Yes, others can be and are uncomfortable with suffering, but it's not our job to make their lives more comfortable or to act in a way that is more palatable to them. We all process our emotions differently, and whatever that looks like for you, don't be afraid.

Face your emotions. Tell those in your life that you don't know how you're going to make it. Tell God you're angry with him. Admit to yourself that you're scared of the future. Let your loved ones know you can't go through this alone. Reach out for help.

Reaching out for help is one of the best things you can do to process through your diagnosis. Tell your best friend what you're struggling with, and help them get a glimpse into what you have to deal with on a daily basis. The only way your loved ones will ever understand what you're dealing with is if you tell them, and if you trust them, then they need to know. They won't always have the right words to say and won't always know what to do for you, but be confident that they want to help you (that's something I have to remind myself daily).

See a counselor. Such stigmas exist around seeing therapists and counselors in this culture, because we think we should know the right answers, and we should just know how to deal with whatever life throws our way. I can't begin to tell you how untrue that is. My husband convinced me to see my first counselor right after we got married, and I'm so thankful that he did. I now recommend counseling to everyone, because we all need someone qualified to help us process through life. Even when we think we don't, that's when we may need it the most. I would absolutely be in a much worse place emotionally if hadn’t seen my trusted therapist.

Encourage one another. We chronic illness sufferers need to stick together. We can't be comparing our diseases to another person's because each illness has its own unique challenges. Build one another up, and be a source of comfort and joy for one another. Life is rough, friends, and we can't afford to alienate others and walk through it alone. Feel your emotions, share them with those you trust, and encourage one another to keep fighting.

And finally, remember this; you are not your diagnosis. Your life may change because of your disease, and you may even change as a person. However, you have not been reduced to your illness. You are so much more, and you are worth so much more. You are not on this earth just to be a living representation of an illness.

You are on this earth to show how strong you are, and how your disease will never control you. It may have taken away some of the things you love, but you can find new things to bring joy in your life. I never would have tried yoga if I hadn't been diagnosed with my PSC, but now that I can't play my first love of volleyball, yoga has been profound in my life. Try new foods, find new experiences, find a way to live your passions within the confines of your illness. It will be difficult at first, but it will be so worth the effort.

When you are living your passions, you have the opportunity to feel fulfilled and joyful, even in the roughest of times. I haven't learned the secret to constant happiness yet (and I never will), but those moments of fulfillment are, in my opinion, a little taste of what heaven will be like. And they make this journey just a little bit easier.

Go forth and do good, fellow superheroes.

recovery
Like

About the Creator

Reader insights

Be the first to share your insights about this piece.

How does it work?

Add your insights

Comments

There are no comments for this story

Be the first to respond and start the conversation.

Sign in to comment

    Find us on social media

    Miscellaneous links

    • Explore
    • Contact
    • Privacy Policy
    • Terms of Use
    • Support

    © 2024 Creatd, Inc. All Rights Reserved.