MY JOURNEY THROUGH A CHRONIC DISEASE

I was diagnosed with a fairly difficult-to-treat disease called idiopathic angioedema and chronic urticaria (a fancy way of saying we don’t know why you swell and hey, enjoy the 24/7 hives).

Seven months ago, the whole world went upside down and made us all quarantined at home, at that time I never imagined mine was going to take a turn for the worse and change forever. If someone has told me I was going to be chronically ill I would have laughed my ass out. Because, I was healthy, everything was normal; nothing special was going on in my life. I was just a normal teenage girl striving to hit it high, and somehow be different and shine. But I guess my wishes backfired on me. I never thought that being different was going to be this “being chronically ill”. At first, we didn’t know what was going on in my body, we were so lost that we went to a lot of doctors that I lost count off and no one knew exactly what was going on for some time. My body was essentially in a constant state of allergy and releases large amounts of histamine into the bloodstream, causing painful tissue swelling and itchy tortuous hives.

Chronic idiopathic urticaria (CIU) is the medical term for someone who has hives for six weeks or more with no known underlying cause. Symptoms can come and go for months or even years. While many people think that hives are always an allergic reaction to something specific, this isn’t the case with CIU. Exercise, stress, heat, cold, pressure, or a variety of other factors can trigger flares. They can also appear spontaneously, triggered by what seems like nothing at all.

Angioedema quickly dominated every aspect of my life, I started entering a state of severe depression and anxiety, and I isolated myself from everyone and everything. I didn’t want to be seen when I was in my most worse mental and physical health. I was weak and exhausted most of the time not just physically but mentally.

In the beginning, I was in a denial state of mind that I couldn’t comprehend the reality I was in. I also had this hope that we will figure things out and I’m going to go back to how I used to be (what life used to feel), but when things dragged on and they started to get more and more complicated, I couldn’t hold up my hopeful and happy façade anymore. The 2nd stage I went through was desperation mode, I was desperate that I cried every single night to sleep; I prayed and pleaded every day for a way out. The 3rd stage was mainly full of anger and it started to grow inside of me, because of demands made on my loved ones everything from exhaustion and fear to guilt and resentment; feeling of frustration and sadness are common when you realize the life you once knew is now different. I felt it was unfair and kept thinking “why me? Why should it be me?”. People started to point out that my mood swings were horrible, but they don’t understand what I’m going through, they don’t understand that the simplest of what they do was a consistent battle for me. Sometimes I just wanted to scream my lungs out and other times I just wanted to feel free and carefree. I knew that mom used to cry in secret feeling sorry for me and I also knew that my dad was stressed out and couldn’t reach out to me. He felt sorry in his way (I guess dad just being a dad) he gave me this piece of advice,

“No one is going to feel what you are going through right now, you are the only one who will feel the pain and the suffering even if we sympathized with your state we will neither understand nor feel your pain so never expect that from anyone”.

His words were 100% true but it made me feel so “alone” and alone was no match for the symptoms of this somewhat rare disease.

It's also exactly what throat swelling from angioedema feels like—quiet, unstoppable, and downright scary, like drowning without being anywhere near water, while I gasp for breath, my throat constricting, having to pop a few steroid pills and wait for the swelling to subside, keeping one hand on my EpiPen for reassurance was a daily routine for me.

I will tell you a funny story to get you out of this gloomy atmosphere. While I was out with some friends at a diner on the day of my graduation, I was pretty exhausted and tired from the long day. My face was pretty much swelled but it was bearable but when I started eating, I felt my throat constricting so I picked my EpiPen in public and stuck it in my arms. The waiter’s face was priceless that I went into a fit of laugher with my friends after seeing his horrified expression; I guess we got everyone’s attention not just the waiters.

The threat of anaphylaxis (the closing of the airways due to swelling) has been the hardest part of it all. It can happen slowly or suddenly, whether I'm watching a movie or on a trip, surrounded by miles of nothingness. It's a frightening pressure, unlike anything I've ever experienced.

The 4th stage was the loss of self and confusion, I was lost, that I started to think what if I just died. I was convincing myself that the pain will go away and I will feel peace. I imagined myself dead a lot of times or dying, but I was contradicting myself I wanted to die but I was scared of death (does that even makes sense?) never in my whole life I wished to be the sleeping beauty aurora more than at that time, but without waking up with a charming kiss I wanted to go in deep sleep with never waking up again.

Every morning there are new hives, different things swollen. I've become a living blow-up doll. Unfortunately, in my case there’s no cure to this disease, however, I live on medications and monthly injections that help in making the symptoms less severe. And if you are wondering why there’s no cure? Don’t worry I asked the same question to all the doctors but I got the same answer from all of them: It's a waste of time trying to figure it out. A needle in a haystack.

Their plan was not to heal my body through the determination and eradication of the root cause but to suppress the symptoms using medications. Of course, this is nothing new. It is the way that Western allopathic medicine has, for years, dealt with the rare or difficult-to-diagnose disease.

The 5th stage and the final one is acceptance and facing life with a new determination and ambition. Someone asked me: “When I see you I don’t feel that you are an ill person; you are always smiling and being bubbly and positive about everything, it never occurred to me that you are going through something like this. I answered with this: “People don’t like to hang out with a gloomy person, and you don’t just stage out that you are sick or feeling uncomfortable or even in pain. I prefer to be remembered as this happy and bubbly person than a sick and depressed person, even if I have to fake it. No one wants to be seen as weak or sick.”

So the moral of my story isn’t to get neither of your pity nor attention. It’s for spreading awareness on chronic diseases and if you have someone who struggles with it try to be patient and understanding. Chronic diseases don’t just come with physical pain it comes with a bundle of more things: mental change, lifestyle change, and environmental change as well. For me it wasn’t just physical but also mental and not just that, the medications I take has a lot of side effects for example hair loss, pimples, spotting on the skin, gaining weight and losing weight in a quick pace, mood swings, depression, panic attacks, dehydration, fainting, and fragility. Maybe I had my ups and downs in this journey and I will still have, but do you know what was the most repeated words that popped in my head whenever I was on the verge of collapsing? They are “I’m a fighter, I’m a believer” I believe I was born for a reason and a purpose to pursue.

(Completed version @youth.inc on Instagram)