The hidden cost of being normal

So you want to go to your friends birthday party on Friday?

Here’s what you have to do:

1. Turn down a dinner invitation for the day after- you know you can’t do both and you’ve committed to the birthday party.

2. Tell your kids they can’t have a friend over that day, you are saving your energy for the event

3. Forgo your scheduled laundry day on Friday, you’ll have to do it Wednesday instead to save up energy. Since you’ll be doing laundry on Wednesday you’ll have to cancel your yoga class because you don’t have the energy for both. You’ll probably need to take some extra pain medication to make up for not stretching in yoga.

4. You don’t sleep well Thursday night because you are in too much pain, so now you have a decision to make. You altered your whole week so you could go to this party but it was all for nothing, you feel terrible. Do you skip the party or do you push through and deal with the consequences later?

5. You decided to go to the party. You’re in a lot of pain and very tired so you decide not to bother with doing your hair, you can’t hold your arms up long enough to do it anyway. Instead you slap on some makeup and hope no one will notice how horrible you feel.

6. You go to the party and have a great time, but you spent too much time on your feet and now you are in a lot of pain. It’s Saturday morning and you really need to get some groceries but you aren’t feeling up to it. You’ll just have to subsist on toast until you can recover.

7. Your sister calls you Saturday afternoon urgently needing your help. You feel like the worst person ever when you tell her you can’t. She saw you at the party the night before and you looked perfectly fine so she’s mad at you for pretending to be “sick” when clearly you were just fine. You try to explain spoon theory but she doesn’t understand and thinks you just make these things up to get attention.

8. The drama with your sister lasts for weeks. She tells other people in your family all about how you refused to help her because you were too busy partying. You try to explain why you are okay some days and not okay others. No one understands, they think you are just trying to get attention.

These are the hidden costs of being “normal.” These are the things that go on behind the scenes that nobody else gets to see. It’s never as easy as plastering on a smile and ignoring what your body is telling you. Every action has an equal and opposite reaction.

* This is a fictional scenario, in actuality my sisters and family are awesome. 

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One thought on “The hidden cost of being normal

  1. You described what we go through perfectly! This is the life we lead as I have to plan around an outing, days before and after to ensure that I can get there and not have to cancel. I always have a good time because I don't get out much and am a social person who is severely lacking in human contact because of this hideous disease! I feel like nobody really understands what the cost is to us and what we go through, so sometimes I don't bother putting myself through the stress. Thanks for telling it like it is! Toronto, Canada

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