To the Person Who Wondered If I Am 'Really Sick'

As someone with the often-invisible idiopathic arterial hypertension (also known as pulmonary hypertension or PH,) I have had small incidents of strangers who have questioned the severity of my illness. I have had strangers question why I use an accessible parking spot. It really sucks trying to justify your illness (especially when it is life-threatening) to a stranger. It isn’t an easy thing to open up about, and oftentimes I think these strangers aren’t asking if you are disabled or not because they genuinely care about you. They are looking for validation. They want to be “right” about calling you out over a silly parking spot. Unfortunately, when you have an invisible illness, I think this is bound to happen with strangers. 

Recently I found out that someone I know asked if I was really sick. It felt like a punch to the gut. Life with an invisible and life-threatening illness is so incredibility complicated and painful. I don’t understand how someone could question the validity of my illness. I figure if one person has questioned my illness, other people may have also wondered how serious it is, and how it impacts my life. Their comments made me feel extremely deserted. 

I may look like a vibrant young woman who is just on the cusp of starting her adult life, but looks can be deceiving. Although I may not look ill, I have received a diagnosis. I have seen many specialists; I have gotten second opinions. My diagnosis shouldn’t be up for debate, but apparently it is. Pulmonary hypertension is an invisible illness to the naked eye, but there are many indicators that I am sick to someone who understands the disease. 

The majority of society doesn’t know what signs and symptoms to look for to indicate that I have pulmonary hypertension. Mainstream media often depicts someone as being sick as looking pale, frail and bald. However, this isn’t always the case for determining how serious an illness is. Many invisible illnesses can be well-concealed, especially with the help of makeup. Not only is my illness well-hidden, but so is my disability. A symbol of someone in a wheelchair is often used for accessible parking spots and bathrooms, even though there are an array of different disabilities (including invisible ones). I believe because of this, society weighs heavily on being able to visibly see a disability in order to believe its validity. Regardless, there are still many different disabilities that do not require a wheelchair, or any visible medical equipment.

I can easily cover up how sick I am — to the point that many doctors ignored the fact that I was in heart failure before being diagnosed. Pulmonary hypertension isn’t diagnosed through blood work. It is diagnosed through a process of elimination. For the person who doubts my illness, I can ensure you that I went through a plethora of invasive tests to receive a diagnosis. 

If you try to walk alongside me, you may notice that I need to slow down, or may have to try and catch my breath while speaking. You might notice me gasping for air if we had to walk up a hill or some steps. People with PH are often out of breath by the time they reach the third step in a flight of stairs. I may look perfectly healthy, but I have a lung-heart disease. Those are two very vital organs that needed to do the most basic of tasks that are often taken for granted, such as going up the stairs, or bending down to tie your shoes.

There is a huge difference between whether someone looks sick, and whether someone is sick. Just because someone looks healthy, that shouldn’t dismiss their diagnosis or their symptoms. I can only assume the uninformed comment about whether I was sick or not was influenced by how I appear on social media. My Instagram account is largely photos of cafes I visit, my dog, my boyfriend and little adventures I go on. Although having a life-threatening illness dictates how I live my life, it does not define me as a person. I don’t want to document my illness too heavily on social media. As such, I don’t include many pictures of me at the hospital (although I do include them from time to time to help raise awareness for PH). I also don’t include many pictures of me wearing oxygen, or taking medications. I don’t want people to pity me, or assume I am trying to get attention through my illness. Social media is also a great way to edit your life; you can only show what you chose to share. I may have a picture of me on a hill smiling, but that doesn’t mean I wasn’t gasping for breath and had to take breaks to get there. For me, I only capture what I want to remember, and what I want my friends and family to remember. 

After my diagnosis I was so terrified to enjoy moments in life. I was scared that if I laughed or smiled, that would mean I was OK with what was happening. Now it seems like I have to be afraid to laugh or smile because of how other people will perceive that. I have my bad symptoms days where I am extremely short of breath, and become even more physically limited. I spend hours each month waiting in waiting rooms of hospitals and blood labs. I also spend hours each month commuting to specialists’ appointments. I often feel ill as a side effect of the medications I am on. These medications are not elective — I also do not get a break from taking them. I must take them every day like clockwork. There are currently no treatment options that will cure the disease I have. 

The medication I have will only slow down the progression of the disease, but unfortunately, it is still considered fatal. It is difficult being in my 20s and knowing that I have a fatal illness. I am at an age where I am watching more and more of my friends get married, travel, start careers and have children. I was diagnosed several months after starting a career job, and I loved working. I was saving up to move out of my parents’ house. I worked with children throughout university and received a specialization in education. To think that I am faking this disease is ludicrous.  

To the anyone who isn’t sure if I am ill, please consider that not all illnesses are visible from afar. Sometimes illnesses are very easy to mask with makeup, or to filter out through social media. Just because an illness or disability is not visible does not mean that it cannot be serious or life-threatening. Its visibility should not equate to its validity.

Follow this journey on The PHlight or Flight Project.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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