What I Wish the Public Knew About My Chronic Illness

I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.

My Diagnosis

What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17^th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.

Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.

The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.

We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.

The Reality of My Stay in Hospital

Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.

Being chronically ill, I spent my leisure hours in the confines of my four-bedroom walls. I was always a bit stir crazy, craving a change of scenery. But when I was finally discharged after a gruesome eight months, I celebrated the victory of returning to the place I once complained about so often. The nurses cheered as I exited the oncology ward.

Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.

However, I knew that I had the power to eventually find myself again.

The Judgement I Receive from Healthy Outsiders

Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.

The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.

My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.

About The Author