Be Kind to One Another

Illness is hard. I mean, really hard.  It assaults every fiber of your being... physically, emotionally and mentally.  Invisible or visible, it doesn't matter.  Suffering is suffering.  Ideally, no one would have to struggle with and feel the pains of illness, but unfortunately that is not the reality of our world.

On the plus side, however, illness gives everyone involved -- the afflicted and their friends and family -- a chance to put love, mercy, faith and compassion into practice.  Really when it comes down to it, those four things are the essence of life.  We should embrace the chance to allow them to flow out abundantly from ourselves unto others.

Personally, being ill has honed my recognition of love, goodness and beauty in the world and the people I encounter.  I'm more reflective.  I see people and situations differently.  Even people I know well, I feel myself caring for them more deeply and seeing their true beauty shine through.

It is very true that illness will show you who your true friends are, and not everyone will make the cut, but those who do stand by you will become all that more dear to you.  While I have certainly felt the hurt of being sick in a healthy person's world, and I can tell some people don't "believe in" my symptoms, ultimately I have had a group of friends really stick by me and try to understand.  They will never know how much that has meant to me and how much I love them for it.  Additionally, my family, especially my mom, has been so amazing and loving.  I know that they have my back and will stand by me, even when it is hard on them too.  Yes, I am so very blessed.

What really breaks my heart are all the stories I hear from fellow POTSies whose family is annoyed with them or don't believe in their illness or friends who disappear because "they aren't fun anymore".  There are numerous stories of eye rolling, passive aggressive comments, or physical and emotional abandonment. This really and truly saddens me that anyone would be treated this way.

So for any doubters out there, let's set the record straight...

POTS is real. It is not anxiety.  It is not hypochondria.  It is a true syndrome with an unpredictable onset of symptoms, pain, exaggerated physiological functions and daily inconsistencies.  Many of the symptoms, while not life threatening, are very scary and often mimic life-threatening events.  Please believe your loved ones and trust that they understand their own body.  Even if you can't truly understand what someone is going through, offer them compassion and don't try to invalidate their illness or their limitations.  We are entrusted with people in our lives to take care of each other, so please accept that responsibility for those around you and be kind to one another.

Let us all try to make a concerted effort to keep those who are ill or struggling in our thoughts and prayers and reach out to them.  I can tell you from my experience that there is no greater renewal of hope than a card, visit, text, email or phone call from a friend.  It keeps me going and gives me a reason to laugh, smile and know that I am still a part of the world around me.


See the resources below if you know someone with Dysautonomia/POTS and want to learn more:

DINET: Dysautonomia Information Network

Dysautonomia International: For Family and Friends

POTS - Together We Stand: Riding the Waves of Dysautonomia [Book]

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome [Video]

Medical Journal Article by Dr. Blair Grubb