6 Things You're Not Told About When You're Diagnosed

6 Things You're Not Told About When You're Diagnosed

What I wish my doctors would have told me when I began my life with chronic illnesses
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When doctors diagnose you with a condition, they tell you how it will physically affect your body. They will tell you the pain you may feel, the nausea that may follow, the rashes that can pop up, the way your body will respond to the disease that runs rampant throughout your body. Whether it be a case of the sniffles or a chronic illness doctors will be able to put a name to your symptoms--most of the time.

But during that window of diagnosis, you may walk out of your doctor's office or appointment feeling relieved that there is an answer to your symptoms, that there is a treatment or an understanding. When I began this journey years ago, it took a while to find my answers but once I did I was so relieved to know that there was a plan for me in the medical world. As the years passed I realized that even though the doctors sometimes understood my symptoms and my conditions, there was so much more that they didn't prepare me for.

1. Stigma

Right from my very first diagnosis doctors put me in the category of being "rare," not only were my conditions considered rare but they were rare in combination and in their presentation. I didn't realize that rare also came along with speculation and stigma. My conditions affect me in so many ways, one of the main symptoms is pain and a lot of the time that pain requires strong narcotics. To put it bluntly, when I walk into an emergency room in excruciating pain and require medications to control that I don't always get the most compassionate response. But this stigma doesn't only affect my physical conditions, but my mental health concerns as well. How can a 22-year-old possibly face severe depression? Believe me, we can. I can.

2. Identity

I'm not sure at what point my identity changed from being "Sabrina" to "sick Sabrina", but it did. It's not a choice because my illnesses are only a mere part of who I am. I refuse to ignore it, and hide it but being defined by it was something I never prepared myself for. Instead of hanging out with my friends, it became them "coming to see me." I deeply appreciate the sentiment but I crave the life of a normal 22-year-old that is defined by her personality and values, not the conditions I face.

3. Loss

I thought that when my symptoms finally had a name, and my condition was recognized I would be able to continue my life as I wanted it to. Truthfully, it has become anything but. My independence is completely limited, staying home alone has become a luxury and even at 22, I require supervision because we never know when the next allergic reaction or fainting spell will occur. I depend on people more now than I did when I was younger and that is such a difficult pill to swallow--no pun intended.

As if it weren't painful enough to lose my independence, but I continually seem to lose the people in my life who have promised to be alongside me. The list of people I trust has dwindled down to less than a handful of people. The invitations to social events have become merely non-existent. Because of my conditions, I can't participate in most of the things people my age enjoy: I cannot be in crowds of people because of my nerve condition that is triggered by contact, I cannot be in restaurants because the smell of perfumes and contamination of food can send me to the emergency room. My conditions are difficult to manage on my own, and most days I feel that it's unfair to ask people to accommodate my needs and that leads to feelings of loneliness and isolation.

4. Mentality

It seems that whenever I feel things couldn't get worse, they do. In surrendering my body to vicious conditions, I wasn't prepared to enter a world where my mental health was compromised too. Sometimes I swear that the mental pain I experience is worse than my physical pain. I've entered a world of depression and anxiety that manage to enter every aspect of my life I enjoyed. There are many nights that I cry myself to sleep because of the pain, because of how I alone I feel. I panic doing things I used to love because I've been so isolated from them for so long. When I feel a tingle in my throat I panic anticipating an allergic reaction. My thoughts get so jumbled up in my head, and sometimes I even manage to convince myself that this world is better off without me.

5. Self-Image

Chronic illnesses are sometimes referred to as "invisible illnesses" because though you may not always see the battle that I endure, it is so incredibly real to me. Often times it's difficult to convey my pain and discomfort to doctors because I look normal, I've been told countless times that my symptoms are "subjective" because doctors can't see them on lab results or just by looking at me. The frustration that causes me is almost as difficult as when my condition is visible. The wide range of medications I'm on come with a long list of side effects despite the resolution they may bring to some symptoms. The weight gain and weight loss can toy with your perception of the body you're living in, sometimes they can exasperate the depression and anxiety I face, sometimes there is hair loss or excessive hair growth to name a few. But the days where my illness isn't so invisible causes equal distress and chaos in my mind. The days when my face is bright red from my angered nerves, when my body is covered in hives from an allergic reaction, the tubes and lines that I rely on to deliver fluids and medications to my body--most times the stares from strangers can break my confidence and the anticipation of that can make me want to hide inside my house until my illness becomes invisible again.

6. Appreciation

Despite all the confusion and negativity that comes alongside living with chronic illnesses, there is beauty in all of this madness. I've learned to appreciate the little things; things like laughing until you cry, a hug that lasts a little longer, a thoughtful message from a friend, reconnecting with people from your past, getting a card in the mail, eating my favourite dessert, connecting with someone who understands, making someone else smile, a warm sweater on a cold day, or a rare, perfectly timed nap that leaves you feeling refreshed instead of groggy.

The list can go on, and on, but the point is that in a life surrounded by so many hardships and unpredictability, we are still able to find the beauty that remains in spite of it all. This life is a gift, no matter how it is handed to you there is always a reason to fight to see another day. Though we may not always have the answers or solutions, or make the best decisions; there is a purpose for each and every one of us and no illness or obstacle can inhibit us from reaching what we are destined to attain.


Cover Image Credit: Sabrina C.

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8 Reasons Why My Dad Is the Most Important Man In My Life

Forever my number one guy.
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Growing up, there's been one consistent man I can always count on, my father. In any aspect of my life, my dad has always been there, showing me unconditional love and respect every day. No matter what, I know that my dad will always be the most important man in my life for many reasons.

1. He has always been there.

Literally. From the day I was born until today, I have never not been able to count on my dad to be there for me, uplift me and be the best dad he can be.

2. He learned to adapt and suffer through girly trends to make me happy.

I'm sure when my dad was younger and pictured his future, he didn't think about the Barbie pretend pageants, dressing up as a princess, perfecting my pigtails and enduring other countless girly events. My dad never turned me down when I wanted to play a game, no matter what and was always willing to help me pick out cute outfits and do my hair before preschool.

3. He sends the cutest texts.

Random text messages since I have gotten my own cell phone have always come my way from my dad. Those randoms "I love you so much" and "I am so proud of you" never fail to make me smile, and I can always count on my dad for an adorable text message when I'm feeling down.

4. He taught me how to be brave.

When I needed to learn how to swim, he threw me in the pool. When I needed to learn how to ride a bike, he went alongside me and made sure I didn't fall too badly. When I needed to learn how to drive, he was there next to me, making sure I didn't crash.

5. He encourages me to best the best I can be.

My dad sees the best in me, no matter how much I fail. He's always there to support me and turn my failures into successes. He can sit on the phone with me for hours, talking future career stuff and listening to me lay out my future plans and goals. He wants the absolute best for me, and no is never an option, he is always willing to do whatever it takes to get me where I need to be.

6. He gets sentimental way too often, but it's cute.

Whether you're sitting down at the kitchen table, reminiscing about your childhood, or that one song comes on that your dad insists you will dance to together on your wedding day, your dad's emotions often come out in the cutest possible way, forever reminding you how loved you are.


7. He supports you, emotionally and financially.

Need to vent about a guy in your life that isn't treating you well? My dad is there. Need some extra cash to help fund spring break? He's there for that, too.

8. He shows me how I should be treated.

Yes, my dad treats me like a princess, and I don't expect every guy I meet to wait on me hand and foot, but I do expect respect, and that's exactly what my dad showed I deserve. From the way he loves, admires, and respects me, he shows me that there are guys out there who will one day come along and treat me like that. My dad always advises me to not put up with less than I deserve and assures me that the right guy will come along one day.

For these reasons and more, my dad will forever be my No. 1 man. I love you!

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An Incurable Disease Doesn't Change The Love I Have For You

Because one day the one you love the most is fine and the next day they're not, it causes devastation you never truly recover from.

nadoty
nadoty
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Loving someone with an incurable disease is the most emotionally straining thing I have ever experienced.

My significant other and I have been together for almost six years. During the summer of 2018, we all noticed the significant changes he was going through. He had lost around fifty pounds and had a lack of appetite. We had figured something was going on, however, we didn't realize it was anything serious.

Fast forward to the Fall semester of 2018. I had visited my boyfriend and we had expressed certain concerns, such as, through the night I would try and get him to stop uncontrollably itching his legs to the point of bleeding, or that he was looking a little yellow and was exhausted all the time. After seeing his sister in November, while I was at school, she pleaded with him to go to urgent care because he did not look good. He was yellow, exhausted, and very sickly looking. We didn't realize that the urgent care visit would be the precedent of the rest of our lives.

After coming home for Thanksgiving and spending a week straight in the hospital with him, it finally set in that something was not right. Between all the vomit, getting moved for testing, the weakness, the constant calling for medications because the pain was so severe, and the almost month-long stay in the hospital, it hit me full force that something was really wrong. Words will never truly describe the emotions I was feeling, or the burden of my thoughts that I felt were too selfish to pass on anyone, so I kept them to myself.

When we finally got the diagnosis, we were surprised. PSC, otherwise known as Primary Sclerosing Cholangitis, is an incurable liver disease that affects the bile ducts which become scarred and inflamed, more likely than not lead to cirrhosis and an inevitable transplant. There was no cure, rather the only solution was a liver transplant, and even then the disease can be recurring.

I was thinking selfishly. I was torn in two. What would our future look like? Could we have children? Could we ever do the things we used to?

Loving someone with an incurable disease is a mix of emotions. There is a constant fear in the back of my mind that he is going to wake up in intense pain and have to be rushed to the hospital. There is a constant fear of every time waiting for the bi-weekly blood test results to come back, in fear that his Bilirubin spiked again or he is undergoing a flare up and needs to be hospitalized. There is a constant anxiety that one day he's going to be fine, and the next day he won't be. Even the simple things, such as laying beside one another, was a constant fear I had, due to the pain he was in every day. What if I hit him in my sleep on accident? What if I accidentally hugged a little too tightly and caused him pain?

Loving someone with an incurable disease can be a fluctuation of emotions, however, he makes it worth it.

nadoty
nadoty

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