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Wednesday, January 29, 2014

I Can't Believe They Said That!

I Can’t Believe They Said That!!!

From one patient to another, we have all had that moment when we think to ourselves, “I can’t believe they said that!”  Sometimes it is a stranger at the grocery store, a coworker or the naïve family member.  Normally the closer the person is to you the more it hurts and the longer it consumes your thoughts.  It is very difficult for others to understand what life is like living with a serious medical condition.  The purpose of this post is for you to share with those most involved in your life.  My hope is that it will be a gentle guide to help the communication between you and them.  The following guidelines pertain specifically to Pulmonary Arterial Hypertension (PAH).

What NOT to say…
  • “You don’t look sick.”  Just because we do not look sick does not mean that we are not feeling poor.  This disease is a microscopic internal struggle between the heart and lungs.  PAH affects millions of tiny blood vessels that branch off from the larger pulmonary artery that is connected to the heart.  Every breath and heartbeat requires more energy for a PAH patient than for a healthy person. 
  • “It’s not that bad.”  A patient struggles regularly to perform daily tasks that would otherwise be simple.  This is incredibly frustrating and an emotional battle.  We struggle with acceptance of the limitations that are placed on us by this disease.  We struggle with the social embarrassments of needing to take breaks because of lightheadedness or turning blue when performing a task that requires an increase in oxygen.  It is discouraging to be meet with non-sympathetic statements. 
  • “I know how you feel.”  You do not know how we feel so please don’t say so.  Our high blood pressure feels very different than the more common type of high blood pressure.  We experience side effects from medications you have never taken.  Multiple hospital stays, doctor visits and medical tests are physically draining.  The way this disease affects us is individualized and it is impossible for you to know how we feel.

What to say…
  •            “I believe that you are sick.”  Instead of telling someone that they don’t look sick, you should believe them.  The way PAH affects the individual fluctuates day to day.  On the worse days it is nicest to know that you’re believable.  Denial of the impact of this disease is only harmful.  Conveying that you believe the patient is sick allows us to feel that you are willing to fight this with us.
  •            “I’m sorry this is something you are going through.”  Sympathy: the perception, understanding, and reaction to the distress or need of another human being.  Telling us “It’s not that bad” while meant to be encouraging is actually naive.  This disease is bad, life or death bad.  To be encouraging say, “I’m sorry this is something you are going through.”  It conveys sympathy to our situation.  It is encouraging to know that our pain saddens you. 
  •          “Help me understand.”  While you may not know how the patient feels, you are able to be more supportive if you gain understanding of PAH.  Listen to us talk about how diagnosis changed our life.  Learn about the science of the disease.  And one of the best things you can do to understand is attend a patient support group meeting.  A few of my friends went with me in college and I clearly remember how enlightening it was for them and how supported I felt.

This is just the tip of the iceberg of what not to say and what to say to a PAH patient.  Please add your own in the comment section below.  Remember share this article with your family and friends!


  1. Like most PAH patients, I have to carry all my oxygen, about 20 medicines, spare equipment for my sub-cutaneous pump, etc at all times. So I have to use a backpack to carry it all. I am 58 years old I might add. One day about 2 weeks ago, as I was walking into the grocery store with my oxygen in use, with my backpack on my back as I was ill, and it was also cold & snowing out. And a bus driver was unloading his passengers, and he saw me. He said to me "Hey Boy Scout, are you going for a hike?" He didn't realize that I was ill. I didn't take a great deal of offense to his comment, but I get the strangest looks from people at times while wearing it. I probably wouldn't have understood very well myself a few years ago before being diagnosed. Most people don't know much about PAH, nor do they understand just what is involved of the patients of PAH lives. Tolerance is the key, for those who don't understand our situation, and tolerance back from them once they do know our situation. These are some of the challenges we all have to adapt to, and sometimes they are difficult to deal with. I try to let things roll off my back if possible. Anger doesn't help our health situation at all. Have a great day to everyone out there dealing with illness.

    1. Douglas, you have a great attitude! I'm sorry that you were ridiculed but glad to see that you don't let it get you down.

  2. I've never discussed my PAH with friends,they know that i have problems with heart and lungs. They have nexer asked how i is to live with PH. I rhink, they don't ubderstand how serious is it. I think,if I talk to them about PH they begin not ot support but pity me. May be it's just our russian mentality, or smth else. and that;s why sometimes I feel lonely. We have no supporting groups. We have only a social group in net work, but it's not enough. It is very important to support each other not only by letters, but on real meetings. Thanks for attention and sorry for spelling.

    1. I would suggest that you try to talk to them about your PH when you feel ready. The discussion doesn't need to be excessive. Just mention the name of the disease and basically how it effects you. It will be safest for you if the people you spend time with know about your health. Also, I am sorry that you feel lonely fighting this disease, but glad you found this blog.