"Suffering the Slings and Arrows of Outrageous Fortune"

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.


Comments on: "Seeing the Unseen" (20)

  1. I understand. I have three 3 kids with a primary immunodeficiency. And I was up past midnight last night, blogging about this very thing.
    People don’t get “it”.
    But WE do, and that’s why we have to stick together.
    Great post.

  2. Terrific post. And we sooo relate. Years of Drs. who sometimes even now say, ” but she looks great”… even knowing the lengthy list of issues.. sigh.. What Abby has learned is the worse she feels the harder she works to “look normal” .. which seems to back fire.. Invisible disabilities are hands down the worst- with friends,family, and especially with the Medical World. Thanks for this one!

    • Thanks! Our current (odd but good) struggle is that, now that Em actually is better, any doctor who didn’t see her at her worst is pretty clueless about what she has been through. Her new geneticist has been good that he says he recognizes that she has come a long way, but I think he would appreciate it a lot more if he had seen it!

      It is frustrating and the more we talk about it publicly, the more chance ‘normals’ have to get it.

  3. Amen. Well written.

  4. This could be me writing about my daughter. Thank-you for writing the words I could never find.

  5. Beautifully written and expressive post Beth – I’d like to share on my Facebook page if that’s OK? Maybe that way some of my healthy friends & family might understand my sick life a bit better! x

  6. I have a friend in Australia, who has this condition herself and is very proactive in every area of her life. I need to know as much as possible before i can see from reading more if i can learn more to help her Thank you for this enlightening piece of work

    • What a good friend you must be – friends who try to understand and who care and who are compassionate and accepting are so needed for a person with EDS, or any chronic condition. You can be be a huge blessing to your friend by learning about her medical issues and being willing to support her. Thank for reading and commenting!


  7. Oh, this is great. I’ve never heard of this particular problem before, but I can totally relate. I have manic-depression, and it’s the, “But you’re the happiest person I know” remarks that get me. It’s, like, they really have no idea. The anxiety. The passing for normal.

    I’m up tonight, in fact, because I’m having a bout of terrible anxiety about my medications. I linked my blog post to your article.

    Thank you. I’ll pray for your family.

    • The term ‘invisible illness’ is such a broad term – it includes any medical condition that affects your life but cannot be seen, so things like manic depression and other mental illness definitely are on the list. And the average person just doesn’t get it – the ‘helpful’ comments can be so painful. But, the more we all talk about it and share our experiences and feelings, the more the world will understand.

      Thanks for commenting and for sharing!


  8. Thanks Beth, fits with what my daughter Rachel and I have been talking about. We had an amazing day yesterday, we tripped all the way to London to see Professor Mathias who actually diagnosed her with EDS 3 and PoTS. it’s taken years to get to this point and he’s suggested some simple things that should make a real difference and further steps the paediatrician can take. Thanks again for the Blog, really appreciate the info we have gleaned from you. Graham A, Gloucester UK.

    • Oh, that is great! I am so glad you got a diagnosis, although, I am sad for you as well! But, it is so much better to have a diagnosis than not. And now, you have someone who is helping and giving you guidance to help your daughter get better – I am so happy for you!

      Thanks for updating me!


  9. […] Seeing the Unseen (slingsandarrowsofoutrageousfortune.wordpress.com) [On dealing with an unseen, though physical illness. This applies so well to mental illnesses.] […]

  10. […] Seeing the Unseen (slingsandarrowsofoutrageousfortune.wordpress.com) […]

  11. Cathy said:

    So well written, it’s so much like our lives. My two kids and I all have EDS. People definitely find it hard to understand and when they ask how you are, I feel like they wouldn’t want to know how you “really feel”. Thanks for writing what so many of us couldn’t.

    • Thank you so much for commenting! Life with EDS is not easy and people are just kind of clueless, aren’t they? It is hard to know how to answer when someone says, ‘how are you?’.

      I am glad you found this post helpful!

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