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What Not to Say to Someone With Pulmonary Hypertension

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I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult, to feel like I was biting my tongue in an attempt not to hurt other people’s feelings — even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation.

Below are four things not to say to someone with pulmonary hypertension. 

1. “At least it’s not cancer.” Pulmonary hypertension (PH) was recently upgraded to a rare disease, after being considered an orphan disease for quite some time. What does this mean? Pulmonary hypertension affects only a very small percentage of the population. For example, I have idiopathic pulmonary hypertension, which only effects about 1 out of a million people. In Canada, about 2 out of 5 people will develop cancer, and 1 out of 4 Canadians will die from cancer, based on 2010 estimates.

Based on these statistics, we can see cancer is a more prevalent disease, meaning more people are aware of how devastating it can be. Unfortunately with pulmonary hypertension, there is little to no chance of remission or a cure with the current treatments available. Although they have advanced within the past decade, the disease is unfortunately still considered a progressive and fatal disease. Many of the treatment options also cause terrible side effects, and can be very invasive.

2. “You don’t look sick.” Pulmonary hypertension can be both an extremely visible and invisible disease. Some people with pulmonary hypertension may require supplementary oxygen, a mobility scooter and/or visible medication such as Flolan, which is administered 24/7 directly to the heart through a rather large pump. Other people with pulmonary hypertension may not require oxygen, or may have less discreet medication (like oral and inhaled). Even when I needed to use a mobility scooter and oxygen, I found people still questioned the severity of my diagnosis because I was rather young and still looked OK.

Do you remember the quote, “Be kind; everyone you meet is fighting a hard battle?” This rings especially true for people living with pulmonary hypertension, which is both very taxing physically and emotionally. It is difficult to adapt to such a heavy diagnosis. I was diagnosed over two and half years ago and my physical limitations still feel foreign and frustrate me to the point of tears. Feeling like I have no stability in terms of my future is also very confusing, and, well, devastating.I think society has this vision of what a sick person should look like, and it is often someone who looks ill due to the side effects of chemo and radiation. Some of us may look totally “normal” on the outside. Pulmonary hypertension affects each person very differently.

3. “Eat, love, pray.” A lot of people who have never faced pulmonary hypertension will try to offer advice. I believe most of the advice I received (no matter how insulting or useless) is coming from a good place. People want to help. People want to be problem solvers.

One of the most infuriating pieces of advice I have received over and over again from strangers online and even people I know in real life is that I should go on some “eat, love, pray” mission of the world before the worst of the worst happened.

Some people with pulmonary hypertension might be able to travel the world, others unfortunately may not.

Why? Well, travel insurance would be very difficult to get. The whole nightmare of traveling with medications and supplementary oxygen. The chance of getting ill. Flying can be dangerous for some people with pulmonary hypertension because of the altitude. Oh, and many people with pulmonary hypertension have to be very careful with sodium intake. Too much salt can actually cause heart failure! Trying a new restaurant in town can be very scary. I can’t imagine trying to order a meal in another country. Traveling is expensive, and so is having pulmonary hypertension. And one more very important point…

Movies and books have a tendency to romanticize having a serious illness. It is important to remember that not everyone with pulmonary hypertension may be physically able to travel. Simply put, many people may not feel well enough to travel. The side effects of medications can be disabling, and this is without the physical limitations the disease may cause.

4. “Do this.” After diagnosis, I found that a lot of people who had never even heard of pulmonary hypertension tried to give me advice on how to get “better.” I believe that most of the strange advice I received has been from a well intended place. People want to be fixers and problem solvers, but sometimes, advice can come across as very hurtful (despite the well intentions.)

For example, many people associate the word “hypertension” with an unhealthy diet. Friends and strangers alike started offering me diet advice. I do believe eating right can help with your overall health, but at the same time, pulmonary hypertension is very different than regular hypertension. There is no evidence that a certain diet can cause pulmonary hypertension. By the same account, going vegan and drinking green juices probably won’t be the magic cure I dream of. I was actually vegetarian before I was diagnosed and ate pretty healthy, minus the occasional poutine (did I mention I am Canadian?)

You should probably leave the diet advice to a professional. If someone wants your advice on something in terms of diet or spiritual guidance, let them come to you. It is OK not to have all the answers. Sometimes listening is the most helpful thing you can do!

What would you add to the list of “what not to say?”

A version of this post initially appeared here on Pulmonary Hypertension News

Follow this journey on The PHight or Flight Project

Originally published: August 4, 2016
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