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The Aspects of My Illness You Don't See

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It can be so easy to judge people based on what they allow you to see. So many people have a public face or persona but behind closed doors, things can be very different. This can be true even more so if you have a chronic illness.

I’ll greet you at work with a cheery “good morning,” but what you don’t see is the effort it took to get there…waking up multiple times during the night because pain decides it was a good time to play, hearing the alarm go off and lying there wondering how I’m going to make it through another day.

You don’t see me trying to follow an anti-inflammatory diet in the hopes of some relief.

You don’t see me needing to sit down for a rest after my shower before I can put my makeup on and attempt to hide my butterfly rash.

When I’m at work, being polite and helpful to customers and coworkers, you don’t see how hard I’m trying to hold it together because the pain just won’t leave me alone. And then someone asks, “How are you today?”

“Fine thanks,” is my standard reply, because if I told them how I really felt I would be sent home and I really need my job.

When I’m at work and I finally give in and take a seat while everyone else continues to stay on their feet, you don’t see all the painkillers I’ve already taken to have managed to last this long on my feet or how much I internally beat myself up about needing to sit down.

When I finally finish work and get into my car, you don’t see me finally let the tears escape.

When I get home you don’t see me collapse into my husband’s embrace and sob into his shoulder that I don’t think I can do this anymore.

You don’t see how bad I feel inside that I can’t be one of these amazing, energetic Mums when I get home from work because holding up the facade has left me completely drained and praying for bedtime. This is what breaks my heart the most.


You don’t see me resting for the entire weekend just so I can make it through another week at work.

You don’t see me forking out for a robotic vacuum cleaner just so it’s one less chore I have to force my body to do.

When I plan a holiday – because everyone needs something to look forward to – you don’t see me making sure I have all the correct doctor’s letters so I can travel with my medications, or the discussions I’ve had with me doctor to ensure I stay well while I’m traveling.

You don’t see me making sure I get enough rest in the lead up to my holiday.

When I post a happy photo of us in the plane about to take off, what you don’t see is how I’ve just finished wiping down everything I touch around my seat with disinfectant wipes because planes are germ-ridden places and I don’t want to risk catching anything while I’m on immunosuppressants.

When I post photos of my many adventures, you don’t see me taking repeated rests along the way, or me going back to my accommodation in the afternoon for a rest, or after going out for dinner, you don’t see me being back at my accommodation to be in bed asleep again by 8:30 p.m. because that’s what my body needs.

You don’t see me ensuring I stay out of the sun, seeking shade constantly, wearing SPF clothing and sunscreen, hat and sunglasses. You don’t see that I book destinations for the wet season so I won’t have to worry about the sun so much while I’m sightseeing.

You don’t see what the medications I need to take are doing to my body, from making my hair fall out, to gastric issues, to my eyesight being in danger, to bone loss. These are just a few of the side effects that can and do happen on a regular basis.

Just remember: the next time you look at someone, there’s a good chance there’s a lot you don’t see.

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Thinkstock photo via Victor_Tongdee.

Originally published: May 31, 2017
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