So many medical conditions are invisible to the normal onlooker – EDS, RSD, POTS, Gastroparesis are just a few that my daughter lives with. It is not easy to live with so many challenges that affect every single aspect of your life, while knowing that people look at you living your life wondering how truthful you are… Are you saying you are sick to get attention? Are you as sick as you claim or are you exaggerating just a bit? How can you look so nice and put together if you are sick? How can you smile and laugh if you are as sick as you claim to be?
As a mom, fiercely protective of this child who has far more to deal with than anyone ever should, I sometimes cringe when I have to tell people that my daughter is ill, very ill, because I know they may not be able to believe me. Not because they are bad people, but because it is hard to believe she could be so ill when she looks so cute and put together and is running around laughing. Or when she is playing her guitar with her friends. Or when she is minding the little ones with a smile and a laugh and a gentle hug. Or when she is acting like a normal teenager, rolling her eyes and flouncing out of the room with predictable attitude.
They don’t see what effort it took to just show up: How much fortitude it takes to get past the debilitating fatigue and simply get out of bed. How draining it was to get dressed and do her hair so she looks presentable rather than looking like an invalid because, well, no 14 year old wants to look like an invalid if she can avoid it. How she couldn’t eat anything for breakfast because it is one of those days and she knew if she did she would battle the nausea and pain all day.
They don’t see her wince when one of the little ones running around grabs her hand and dislocates a finger and they don’t see her quietly putting that finger back in place without a word or a whimper. They don’t see her periodically roll her shoulder to realign it or swivel her wrist so it is back in place or twist her torso so her ribs go back where they belong or shift her hip so it slips back in the socket. They won’t notice her quietly pull away from a gentle pat on the arm that causes her RSD pain to flair up and they won’t realize that she will endure it in silence rather than pointing out that they just hurt her. They won’t see her head swim and her vision dim as her pulse increases the longer she is upright and they will think nothing of her sitting down quickly because they have no idea she will faint if she doesn’t.
They don’t see the toll trying to be normal takes. They won’t ever see her collapsing into the car seat on the way home because she is exhausted by the hours she spent doing what everyone else does without thought. They won’t see her taking her regularly scheduled meds or taking her break-through pain meds when she is feeling the effects of doing too much. They won’t see her the next day when she is in bed because she has to recover from life. They won’t see her putting on a brave face, dealing with the pain that comes from living, knowing that to not live would be even more painful. They have never seen her at her worst – confined to bed, gritting her teeth against the pain, lying in the dark, nauseated and dizzy – so they have no idea how far she has come in battling the conditions she lives with.
To me though, her invisible illness is not invisible at all… I see the wince when her joints go out and the fidgeting she does to put them back. I see the exhaustion and pain that lurk behind her eyes. I see her pallor and the furrow in her brow when her headache starts and I see the effort it takes her to keep going. I see the sadness that surfaces when she makes a choice to protect herself rather than do something that hurt her and the wistfulness that she hides as she watches others do what she cannot. I see the frustration at all that has been taken away from her. I see the bravery and the occasional bravado that she faces her challenges.
Yes, she lives with invisible illness but it really isn’t invisible if you look. I am sure this is true of everyone who lives with an invisible illness. Of course, it takes more than a casual glance to see it – you have to see that person, really see them. You must see their heart and soul; see them in the same way that you really hear someone, instead of just listening to them. You have to be open to their pain and their challenges and be willing to reach out to them once you see it – for most, living in ignorance is easier, so they will never see… Truly, ‘There are none so blind as he who will not see.’ And that is the problem: most people don’t want to see and don’t want to take the time to reach out.
Living with an invisible illness means suffering in silence; unseen, unnoticed, rarely acknowledged and often questioned. But, if you do more than look and listen – if you really see and really hear, my daughter, and the millions of people like her, won’t be invisible anymore. That is what the campaign to bring awareness is all about. If you open your eyes and your heart, you will be able to see what was once unseen and that will mean everything to a person who is living with an invisible illness.