Sunday, 25 May 2014

"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.

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