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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Dreading This Day All About Love

Valentines day blues

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I have never enjoyed Valentine's Day.

Even if when I was in a relationship it was just an awkward day of "hey I love you, give me gifts and lets make out." But this year, I am just not feeling this thing at all. Since the relationship ended last June I have just been dreading the time when February came, because you know that on the 14th you are going to see all these love post and all us singles are like "welp this is just not my day.", and honestly you feel defeated. I personally asked other singles friends (like the three I have) if they wanted to come and watch Netflix with me and dread the day, but sadly they either had school or work. So here is my plan of getting though this day of love:

NETFLIX

Yes Netflix how else am I supposed to get through this day? Usually I have Greys Anatomy playing all the time but that has love in it, and I am not in the mood for that. My plan is to watch all the crime shows I can because watching TV crime series or documentary about serial killers just seems perfect for the 14th.

SLEEP

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Yes sleeping. I don't have anywhere I need to be why not catch up on some zzz's

CHOCOLATE

Yes I am going to eat my feelings with chocolate because why not? if I could I would get a giant slice of cake and live off that on the 14th but sadly I am stuck with the normal Heresy's chocolate and Reeses which will do their job.

CATS

me :)

This is my wonderful cat Kimber and she will be my partner in crime on the 14th. She will sleep, snuggle, cuddle, all day with me because I need that moral support of my fluffy cat.

BOOKS

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If I am able to fit reading a book into my schedule of everything listed above then reading will go into that open spot. I always loved reading but with school it is hard to find the time to read for enjoyment. so this day will be the perfect day.


This is my plan for the 14th of February and hopefully this will help me get though this dreadful day. And if you are also single try this out :)

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