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Invalidation of our struggle with pulmonary hypertension can come in two ways: invalidation by ourselves and invalidation by others.

We invalidate our own battle with the illness when we say “yes” to others requests but know we need to say “no.” By saying “yes” we educate those around us that we can do more than we can, we ignore our limitations and tell our body it will have to take a back seat in this situation. We also invalidate ourselves by ignoring our body’s signals.

Over time, if we fall into these traps often enough, our body can feel betrayed by us. Our body is sending us signals every day; our body speaks to us through the sensations, feelings and intuitions that we experience. Some days the communication is intense, for example ‘severe shortness of breath,’ but other days the communication is more subtle.
The more we can tune in to all sensations, feelings and intuitions and use them as a cue to guide our day, the more we validate our struggle and honor ourselves. We also honor our body for its ability to manage the moment as best it can. Specifically how we do this is:
  • We take time to sit still and breathe.
  • We check in with how we feel.
  • We take time to sense where we feel tension or other sensations.
  • We bring mindful awareness to our day and keep checking in as the day unfolds.
The more we get used to noting this information the more we can use it to validate ourselves and say no when we need to, pace ourselves in a way that works with our illness and not against it, do some vital self care regularly, and communicate with others about our limitations. 

The other side of invalidation is how others respond to us. Some don’t see our illness, they make out that we are exaggerating our symptoms and try and trigger our guilt by demeaning or undermining our limitations. If we suffer with pulmonary hypertension we can feel immense frustration at this lack of understanding. Also loud internal conversations such as the following can dominate our mind:
  • How come they can’t see my struggle and how hard I try to meet my own and others’ expectations?
  • I feel judged, misunderstood, and invisible, no one is able to see how tough my life is!
  • If I had a broken leg or something more obvious I am sure I would get more empathy.
  • Do I have to have a melt down for people to really get it?!
Internal conversations are a natural response to invalidation by others. One choice we have is to communicate openly and regularly about our feelings and limitations; we then have the peace of mind that we have tried our best to stay close to those around us. If those conversations don’t lead to an increased understanding, then we know there is nothing more we can do to bridge the chasm and we may need to disinvest emotionally for self-preservation.

All of these decisions are tough choices. No one can advise us what to do; in our heart of hearts we know not everyone can accept the pain and suffering of others, particularly when it takes us to very dark places in life. At the end of the day each human being on Planet Earth is confronted by others’ suffering, and only they know what they can and cannot handle in others.