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.
