No one truly prepares you for the diagnosis that will change your life forever. After all, how can they? The only person who can fully understand what it is like to live the remainder of your life with a chronic illness, one whose symptoms could flare at any time, is you.
Illness is a lonely journey, one that many will encounter at one time. For many, these illnesses are temporary, mere roadblocks in the paths of our lives that we will overcome. For others, the roadblock is not a simple inconvenience. It is the ENTIRE road.
I can recall the mounting anxiety I felt after one particular bout of illness. I became sick with the flu after my kindergarten son came home ill, a victim to one of his classmates who had brought his germs in to the classroom. As I nursed my son back to health, I found myself exhibiting many of the symptoms he displayed, and immediately recognized that I too was becoming sick. I awoke one morning shortly after, and ached. My entire body was sore and I had zero energy. I disliked going to the doctor, but knew in this case that I needed to be seen.
I wasn’t getting better.
Several weeks later, I found that I was still lacking energy and tired easily. At the time I was working a 40 hour week at a high stress position and then coming home to raise two energetic children. I attributed my overall malaise to the busy schedule I lead, and ignored my symptoms, until one day, in the middle of my office I nearly fainted. I was sitting at my desk, my headset propped on my head as I spoke with a client. I felt warmth overcome my entire body, before the overwhelming sensation of dizziness struck me and I felt as if I were going to vomit. I advised the client that I would have to disconnect the call, and placed my self in to a blocked state. As I lay my headset on my desk and stood, my balance was unsteady. I am surprised that I did not fall to my feet at this point, yet somehow I managed to traverse the rows of cubicles and arrive in the bathroom in an upright state. I phoned my mother, and told her that I needed to see the doctor. My body was sending warning signals, and it was finally time for me to listen.
I listed my symptoms. Dizziness. Nausea. Hearing loss. As if reading from a menu of possible ailments, I listed the most notable issues I was having at that point. Exams were performed, and I was asked the same series of questions. How long had I been feeling this way? Did I have a family history?
After what felt like a countless number of tests and a never ending exam sheet of questions, I was referred to a specialist. The symptoms I had exhibited had a name. There was a disease, and it had no cure.
I was devastated.
In life, we measure our journey through a series of defined moments. Life changing events take precedence, anniversaries on a scale. The day we graduate. The day we marry. The day we bring our children in to the world. For those who suffer from a chronic illness, we measure our lives in segments. The day before diagnosis.
And the day after.
We measure our lives on a scale of the life we had before illness. The lives that did not know symptoms, or medications, nor specialists. The lives that knew health above all else.
If you find yourself recently diagnosed, or even many years in to your chronic illness journey, feeling overwhelmed by the breadth of your disease, I want to promise you this.
There will be wonderful days. Days in which you feel like you are completely healthy. Days that are not concerned with medications, nor symptoms. Days that will not be defined on a scale of how “normal” you feel.
To counter, there will also be days that will be filled with illness in every sense of the word. Symptoms will flare, and overwhelm. Bodies will be pushed to their limits, and emotions will be tested. You will likely find in these moments that the darkness creeps in, and fills your mind with self doubt. You will begin to question why you are the one to suffer from this particular condition. You will feel hopeless, and you will want to give up.
But in those moments, dear reader, know that I understand. I have been there too, and I continue to deal with this condition every day. Some days are better than others.
And friend, I want you to know, that even though it feels like you are your illness, you are so much more. You are a husband, or a wife. You are a son, a daughter, a teacher or a friend. You are a mother or a father, a person who is loved and is worthy of love in return.
You are not defined by your circumstances, or by your health. And in those moments when you want to give up, remember this.
The life you lead is so much more than medications or symptoms.