My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.
My name is Vaso.
A disease quartet works non-stop to disrupt any notion of normalcy in my life. I was diagnosed with Crohn's disease at a very young age and the diagnosis of psoriasis and psoriatic arthritis followed very soon. Having come to terms with these diagnoses, I hoped that my life would return to normal.
Some years later, at the age of 25, I was diagnosed with adrenal insufficiency. Luckily I did not realize how sick I was then or maybe I subconsciously chose not to think about it. I was diagnosed with adrenal insufficiency in April 2020. No one told me exactly what caused it, I was told that this was probably an autoimmune etiology - my point, I collect them.
That day I learned that high cortisol is harmful, but low cortisol can be deadly. My diagnosis of adrenal insufficiency was not something I easily accepted and I do not think anyone had prepared me for all the upheavals it would bring into my life. It was like falling asleep and waking up in a parallel universe.
In one night, every minute of every day had changed irrevocably. Before the spring of 2020 I had not heard anything about adrenal insufficiency. I was in the hospital, thanks to the privilege of access to modern medicine, I soon had a diagnosis. But what is it like to have a diagnosis that, in a crisis, the result can be potentially fatal?
“In one night, every minute of every day had changed irrevocably.”
Looking back on the course of the diagnosis, I have a feeling of tremendous frustration. But I also remember doctors - who perhaps literally - saved my life. The literature assures that patients with adrenal insufficiency live a completely normal life. I will disagree, at least until the moment this text is written, since after my diagnosis and while receiving replacement therapy, my daily life and functionality have been significantly affected. Adrenal insufficiency had been around for several months when I was diagnosed.
I lost weight for months and I did not know why. For months I had nausea, dizziness, fatigue and many other symptoms. It has been a little over a year since I was diagnosed. I have not yet regained my functionality, but my life is probably no longer in danger, not to a serious degree at least. I have not become "normal" again, nor does the treatment work as well as I would like.
Adrenal insufficiency is a daily challenge in its management.
Every time I am confronted with an event that causes me physical or emotional stress, I ask myself: "In this situation would a healthy body produce more cortisol?". If the answer is "yes", then I take a little more hydrocortisone.
I visited several endocrinologists. Most of me left with a weight of a non-productive appointment, disappointed, I felt like I had wasted more time, that I was in the middle of nowhere again. Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.
“Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.”
All of us at some point in our lives experience an experience that defines us, what we say "changes our lives". Usually, such socially acceptable experiences are a marriage, the birth of a child and some more. For me, this crucial experience was when I was diagnosed with Crohn's Disease. The second crucial experience was the diagnosis of adrenal insufficiency, a rare diagnosis that is potentially life-threatening in a crisis, a diagnosis with a disease I had never heard of before.
I felt defeated, as if the world had suddenly stopped. Hope hit a wall with 100km/h, when the doctor said "there is nothing else we can do, you have to learn to live like this". Punch in the stomach! Whatever he said after that, I did not hear.
"Learn to live with it." What did this mean for my life?
My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.
Illness makes you re-examine your life as a whole, your priorities.
The disease leaves you naked and exposed, because anything familiar until then may be a potential enemy. The disease forces you to go deeper into your deeper layers.
I will never be healthy again and that has changed the way I look at things: my body, my health, my relationships, my work and my life. When things get tough, people tend to say, "This is going to pass." But what happens when this is never going to pass?