To The Person Who Wondered If I Am Really Sick

A photo where my invisible illness is visible.
I sleep with oxygen every night.

As someone with the often invisible illness Idiopathic Arterial Hypertension (also known as 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 often time these strangers aren’t asking you about whether 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 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.

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 make up. 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.) Because of this, society weighs so 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 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.

At one point I had so much radiation exposure the technicians running the various x-ray, MRI and CT scans turned me down for another test, fearing it would be too dangerous. However, a specialist demanded that I had another CT scan, even though I had several in the past 24 hours, and even more in the last week and month leading up to my diagnosis. Dozens of vials of blood work was also ordered to rule out other underlining diseases, such as HIV.

The most invasive and effective procedure for diagnosing PH is called a Right Heart Catheter (which I had on Christmas Eve in 2013.) For this test, a tool is placed in a vein in either your groin or neck that leads to your heart. Mine was placed in my groin and the tool eventually made its way up to being directly in my heart to measure the pressure my pulmonary pressures. I was completely awake for this procedure, and was only given a small numbing in my leg. This test confirmed that I did indeed have a high pulmonary pressures, and I was officially diagnosed with Pulmonary Hypertension.

If you try to walk along side 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.

Being short of breath was actually one of my first noticeable symptoms. I had my first symptom in Fall 2013. From there my symptoms progressed at an alarming rate. I was diagnosed quite quickly, as most people wait 2 years for a diagnosis. However, by the time I was diagnosed I was told that I was somewhere between a stage 3 and a stage 4.  Even though I was on the verge of dying, I still didn’t look sick to trained professionals (which delayed receiving a diagnosis before the progression of the disease kicked in.) If I didn’t received medical intervention when I did, I am not sure how much longer I would have lasted. In the weeks and days leading up to my hospitalization, I would wake up gasping for air. I had started to stop breathing in my sleep.

Pulmonary Hypertension doesn’t just make you short of breath; it narrows the arteries in your lungs. This makes it more difficult for oxygenated blood to be pumped throughout your body, causing an overloading in the heart as it desperately tries to pump blood. All this extra work causes heart failure. A symptom of PH is having an elevated heart rate- many people with PH experience a heart rate similar to someone who has run a marathon while doing a simple task; such as walking, or cleaning the house.  Many people with PH (like myself) also suffer from lower than normal oxygen saturations and dyspnea. Having low oxygen satuations also causes someone to tire very quickly because of how hard their body must work to accommodate.  Perhaps these aren’t visible symptoms, but that shouldn’t make the seriousness of an illness illegitimate. These symptoms are serious, and can escalate the progression of the disease, and can lead to organ damage and failure.


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 nor their symptoms. I can only assume that 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 that I was okay 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 great a break from taking them. I must take them everyday like clock work. 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 20's 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 parent's 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 make-up, 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.

Disabled and Rejected from Disability

Throughout my diagnosis I have learned that there are stigmas surrounding those who are sick and disabled. These assumptions are mostly made by "healthy" people who have never ever been in this sort of situation. These judgements range from a mail carrier who questioned my mother and I for using a parking space designated for people with disabilities, to me being rejected from receiving disability from the provincial government. I've learned the hard way that people don't expect someone who is disabled, or sick, to wear the lipstick shade 'Hot Gossip' by Mac, or have a cat eye so strong it could steal your man. I think people want me to wear sweat pants- and not the cute sweat pants unviersity girls wear for yoga. The baggy ones that your dad wears from Costco.

Another thing that I have learned is that in order to apply for disability (despite having an often fatal disease that has left me disabled) is that you cannot have savings in your bank account.

Me in my pajamas in bed.
This is what people expect being sick/disabled to look like.

How I actually dress when I leave the house.
(On a good day of course. Did I mention I like Lana Dey Rey?)

About 3 months ago I had to resign from my job. I had returned 6 months after diagnosis (which in hindsight, was way too soon.) I returned to work for an almost a year, but found that I was physically no longer able to work. Unfortunately, my job was increasing my symptoms. It felt like I had the flu all of the time because of the extreme facial flushing I would develop from the stress. I would also have the chills and aches throughout my body. I felt like garbage all of the time. I felt too tired to do anything, too tired to enjoy life. I felt like I was living to work, and when you become aware of your own mortality- that is a very unpleasant feeling. I knew that this day would come, so I had saved my earnings. I resigned, or retired, whatever you want to call it. Since leaving my job I have more energy, I feel better, I have less symptoms. I am able to do more, and do more things to take care of myself.  It is clear that the stress and physical demands of my job were taking a toll on me.

Because I am no longer working, I tried to apply for assistance through government funding programs (ODSP or the Ontario Disability Support Program.) I learned that I was not a candidate because I had saved up too much money. Frustrated, I told the woman on the phone that I was essentially being punished for becoming sick and saving my money to prepare for my future. It was infuriating. I was informed that I could call back once I used most of my savings, and had less than a certain amount in my bank account. She told me to call back once I had less than 5 grand in my savings, which would pretty much leave me in poverty. (As a side note, the average cost of a funeral in Ontario is a little over 4 grand.) I was also asked if I had any assets, because I would more than likely be required to sell them before being considered for ODSP.

If I did not live with my parents and have their support, I would have to rely on the ODSP. I would not be able to afford rent, pay for food, and my medication. The allowance received monthly is barely enough to cover rent in the area. A study in 2014 showed how more people who are disabled are living in poverty and are using a food bank. Does this sound like good social program to you? Because it doesn't sound like it to me. Why are we putting sick and disabled people in a worse situation instead of helping them? The system is set up so people who need disability can never get out of a financial hardship, or must put themselves in a financial hardship in order to apply- despite being unable to work due to a disability.

I completed university, and was planning on a bright future. I have worked for 12 years of my life, which may not sound like a lot, but I am only 27 years old. That is nearly half my life. I obtained a job where I was making good money and receiving benefits. I would have stayed and worked full-time if I could have, but clearly I couldn't. I saved my money because I don't really know what will happen in the future. What if medication becomes more expensive? What if I need treatment outside of Canada (because we do not have access to everything that is approved for PH here.) What if something unexpected happens? What if I am able to move out someday- because I would really love to? Am I no longer entitled to any of these things, or savings, because I got sick and became disabled? Does the government feel I am no longer entitled to have a future because of my condition?  Doesn't saving and preparing for the future make me responsible? Clearly I did not plan on this happening, nor did I want it to happen.

Let's examine divorce laws. If a couple were to get a divorce, one partner might have to pay spousal support (alimony) to their ex. The argument is that the other partner got accustomed to a certain lifestyle. Another argument is that maybe the lower earning partner had wasted potential, maybe they never went to school because they had children and stayed home to raise them. Thus, the other partner who worked (or is earning more) would be required to pay spousal support to their ex so they can maintain the lifestyle they had while married. I am not saying that it is unfair or unreasonable that people receive spousal support (because I have learned through all of this that I do not have enough knowledge to judge someone.) Although, I do think it is an interesting concept. I am not entitled to maintaining my lifestyle (even though I worked hard and got an education) because I got struck by metaphoric lightening. If someone could see the timeline of my life, they could see I spent half of my life working hard to prepare for my future.

It is strange being told that I am basically not allowed to have savings, or maintain/keep what I have accumulated. This disease has made me question whether I will be able to get married, move out, or have children. Now I am questioning if I will be able to afford these things, should I ever be lucky enough for them to happen. I feel very conflicted about my future for a magnitude of reasons. It is hard planning for the future when you are told not to invest too deeply into having one. When I decided to start living again despite what the doctors and statistics say, I have the worry of whether or not I can afford to live. I struggle with feeling like a burden, although I am graciously trying to accept that people help me because they want to, and  because they love me. I fear that now I will become an even greater financial burden. I've been with my partner for over 5 years. We talked about getting married before I got diagnosed. I don't know if I will ever get married now, but I hate the idea that he would be taking on my finical burden.

All things aside, for now I am fine. For now I am lucky. I know I have the support of my family and partner. I am also receiving a small amount of money for disability benefits from the insurance I had from work. (This will not last forever, and the amount is modest compared to what I made working full time.  The amount is actually close to what ODSP would have given me.) I will continue to save while I can, because I want to plan for a future. I want to plan for my future. For a while I debated whether I should make a board on Pinterest for my hypothetical wedding, or funeral. Recently, dreams of getting married have won. I have also made boards for interior designs that I like, because I want to move out too.

The Countdown is On!

Wow! Thank you everyone for the interest in The PHight or Flight Project. I cannot believe the amount of interest it has gained in five days! Since Sunday The PHight or Flight Project has had over 800 page views from all over the world! Today The PHight or Flight Project has had nearly 200 page views thanks to the Pulmonary Hypertension Association's support on Facebook. I have also managed to raise over $700 for PHA and PH research thanks to the generous donation of readers.

Needles to say I have been very busy connecting with other PHer's who have an inspiring journey to share. Yesterday I went out and bought a keyboard for my tablet so now I can work from outside. The picture above is of me working at my new office, the deck- and yes, I am wearing a hideous tropical print shirt. I recommend working outside to anyone who can! If you can't work outside, at least enjoy a cup of coffee or tea outside a few times a week. Since diagnosis I have been a little home bound because of the giant oxygen tanks that are not fun to lug around. To cope, I went out and bought a bird feeder. I have always loved nature and animals, and my parents have an amazing backyard! The bird feeder has attracted a family of ducks, a raccoon, a skunk, a chipmunk we have named Rocket and lots of other animals that don't belong in a bird feeder. The less an animal belongs in the 'burbs, the more exciting!

Tomorrow is The PHight or Flight Project's first PHighter Friday. For those of you who don't know, on Fridays I will be posting an inspiring PH journey of hope on every Friday that I have a PH journey to share! Good news, so far I have four PHighter Friday journeys finished and waiting to be posted. You won't want to miss tomorrow's PHighter Friday. We will be hearing from a young lady who has had PH for 11 years and is on oral and inhaled medications. She says she is doing better than ever! She is very active, and has a very physically demanding job.

When I was first diagnosed (a little over 5 months ago) my dad showed me this video. I wanted to share it with all of you to get ready for our first PHighter Friday, which will be posted at 9:00 EDT am tomorrow.



In the above video clip Donna Head discusses what Pulmonary Hypertension is, and talks about her life after more than two decades after her diagnosis. She was originally told she had two years to live and would need a lung transplant. Donna discuses what medications she has used through out the years. At the time of filming, Donna remained stable on oral and inhaled medication. Donna does not call her PH a terminal disease, but calls it a "problem."

* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.

What is a 'Spoonie?'

Have you ever heard someone refer to themselves as a Spoonie? Do you know what a Spoonie is?

I didn't know what a Spoonie was until very recently. I started seeing more and more people refer to themselves as a Spoonie as I connected with more chronically ill people online. One day a friend of mine on Facebook posted The Spoon Theory, written by Christine Miserandio. The article discuses how the author suffers from chronic diseases/illnesses. Although she doesn't look sick, her body is. Each day she (like many other Spoonies) faces limitations because of her disease.

The idea behind Spoon Theory is that those with a chronic illness or disease wake up each day with a certain number of spoons. Those without a chronic condition wake up with an unlimited number of spoons. Every time you complete a task it costs a spoon. This may not seem like a big deal, but someone with a chronic condition that limits their mobility may wake up to have 20,15,7, or even 5 spoons a day. Many of those of us with a condition like Pulmonary Hypertension must use a spoon for even the most basic of tasks. These basic tasks are often things that those without a chronic disease or illness do not need to think twice about. I suggest that you read Miserandio's article on Spoon Theory, but I will shortly explain it in my terms.

I'm not much of a spoon gal. I imagine myself walking around with poker chips, and although my chances of developing Idiopathic Pulmonary Hypertension was one out of a million, I ain't a millionaire. Instead, I have won the "crap" lottery. Everyday I wake up with X amount of chips. Lets say today I woke up with 13 poker chips. On this day I have decided to go out, so I will need to shower. Showering will cost me one poker ship. Now I need to blow dry my hair, that is another chip. I get dressed, that is half a chip (let's say half a dollar.) I go to the mall and walk around for 2 hours, we will say that is 5 chips. It adds up quickly huh? It isn't even 3:00 pm and I am almost out of chips. I'm really tired after the mall, and want to change into my pajamas- which are all the way up stairs. Stairs are very difficult to tackle with this disease, and my parent's house has large ceilings. That means I will be climbing 15 painful steps to go up stairs to my bedroom. This will leave me completely breathless, and make my heart pump so hard it feels like it is going to burst out of my chest. To go upstairs, clean my face, and put on my pajamas costs me another 3.5 chips. Each day I must ration my chips, and decide in advance what I will do that day, or how I will spend my chips. Plus, you always wanted to make sure you have a few spare chips up your sleeve, for "just in case."

It is difficult, I certainly miss being a typical 25 year old who could do whatever I wanted to without worry. My days of staying up past 10:00 pm and going to the bar with friends are long over- at least for now. I still have hope that I will continue to get better and better (and better and better....)

I do want to share that I am improving. When I was first diagnosed I needed a stool to sit down in my shower. A shower back then would have cost me 15 chips. I would come out completely pale and blue. I was done for the rest of the day. Now I am able to shower standing, and although isn't a brainless task like before, it is easier to manage. I am able to work out for an hour or two each day. This includes walking for an hour, and using an exercise machine where I must use my legs and arms to lift my body.

Before all this, I had really gotten into working out. As soon as I was able to stand again I started off really slowly. Starting with maybe 10 minutes of Wii Fit yoga, then 20 minutes, and eventually moving on to strength training. I am super determined to function as well as humanly possible with my diagnosis. Whatever happens, I will have no doubts that I didn't give it 150%. Even on days where I would spend hours bawling my eyes out, mourning the loss of what I thought my life would be like, I eventually pulled my butt off of my chair, wiped my tears, and did some light yoga. If you have Pulmonary Hypertension and want to work out, make sure you discuss what exercises would be safe and suit you the best with your PH specialist. I have an oximeter so I am able to make sure my 02 levels and heart rate are at a safe number for me while I work out. It is a great investment if you do not have one yet.

Although I have won the "crap" lottery I am very rich in other ways. My amazing parents help me with anything they can - they go above and beyond for me. My mother helps me take off tight pants and paints my toenails. If I am tired, my dad carries me up stairs- all the way up 15 steps. They have done so much for me. My boyfriend has been incredible through this too. I will save all this for another day when I discuss the role of caregivers, and how grateful I am for mine.

"But You Don't Look Sick" and Oxygen

One of the things you hear a lot with an invisible illness like Pulmonary Hypertension is that you don't look sick.

Yesterday I posted a photo of  myself on social media of me at a cafe with with my boyfriend and I wasn't wearing my oxygen. This lead to several messages asking if I was okay to visit yet, and false excitement over discontinued use of oxygen. I am currently on supplementary oxygen and have been since December 16th 2013. Sometimes I can sit without it for a bit. I hope to one day get off of it completely, but I know that not everyone is that lucky. I have had several specialists say they are confident I will get off of it completely, so I am trying my best not to worry.

For those of us who are on oxygen, it is probably one of the only thing that makes us look sick. It isn't "normal" to see a seemingly healthy 26 year old with a cannula in her nose while her boyfriend drags around her oxygen tank. While it is saving my life, and helping me hopefully heal, it is a pain to wear. As another bonus, people who never recognized my boyfriend and I as regular customers now do. He even got a free doughnut the other day because we go somewhere so much! People will remember the girl being walked by her boyfriend.

It is certainly hard to feel attractive while wearing the oxygen. I feel permanently (if only for now) leashed to my disease. I have to sleep, shower and live on a leash. Unfortunately strangers don't make my insecurities much better. I had one bank teller ask me if I was dying, what I had, how I got it, and if I needed oxygen for the "rest of my time." A lot of people give me really rude stares as if I shouldn't have left the house. Sometimes children ask their parents what is wrong with me. I am really tempted to shout that I didn't eat my vegetables as a reply, but I studied child psychology and wouldn't want to screw up anyone's eating habits.

One of the reasons I didn't know I was so sick before diagnosis is because I didn't look sick. The picture to the right is me four days before I was hospitalized at a local hospital. During this time my heart was severely enlarged and surrounded by fluid. There was so much pressure in my heart that my heart created a hole in its wall for relief. I was in right heart failure and had no idea. I had a right heart catheter on Christmas Eve to check my heart and pressures. Like some kind of Christmas miracle, I had no heart damage. I was also at 43% lung capacity. To qualify for a lung transplant one's lung capacity must be at 30% or below. After I was hospitalized my symptoms got worse, and I did look very very very sick. I was in really bad shape when I was first diagnosed. It was a really scary time in my life, and I still am scared. I've come along way, but I still have a lot to go, and I think that is what scares me. I am scared I won't get "there."

If I wasn't on oxygen, I wouldn't look sick but that doesn't mean people won't stop staring or being rude. When you don't look sick, strangers and maybe even friends, may wonder why you can't keep up at a certain pace. They may wonder why you avoid the stairs and search for an elevator. People may assume you are out of shape because you are breathless from walking up a small hill on the way to a shop. They may stare, or even worse, harass you for using a disabled parking spot. Many people have never heard of Pulmonary Hypertension, and do not understand the limitations it can cause. It is hard enough finding the courage and strength to leave the house, only to have strangers think it is their duty to play parking patrol.

This isn't to say that all encounters with strangers I have had are are bad. I have had several young ladies compliment me on my hair. At first I thought they were staring because of the cannula in my nose. Then I was reminded that I still am a 26 year old who tries even harder to look good, and other ladies notice! I have had strangers ask if I needed help or if I would like to go ahead of them in line. Waiting staff at restaurants are really accommodating to my diet, and I think the cannula in my nose shows I am not on some trendy gluten free diet. Friends and family are the most important, and my family doesn't even notice my oxygen cord (they trip over it all the time!) Plus they still think I am beautiful.

Perhaps the important thing is that I am learning to appreciate myself. I never felt very good about myself and the way I look. Now I am learning to embrace the things I disliked before. I never knew how strong I could be until now, and that is the most beautiful thing of all.

* Please find a related article about living with an invisible illness here. In the article Not all disabilities are visible, Nicole Dempsey shares encounters she has had while using her accessible (disabled) parking pass.