From the outside looking in

What do you see? I know what you see, you see someone who works full time, probably goes to the gym after work and then goes socialising. 

Appearances are decieving. That girl was medically resigned from her job, she doesn’t have a gym membership and she doesn’t socialise all that much. That girl has a disease that, to put it frank, can kill her if it wanted too. That girl has heard her mother say the words “it frightens me” because she doesn’t know if tomorrow, her daughters organs will shut down or if tomorrow she will race against time to get her to a hospital in time due to a blood clot or internal bleeding. 

The point of this post is because some people don’t take it seriously because I look just like my peers. Have you ever been in a situation where you said “I feel so unwell” and a colleague/friend/family members replied “you’re fine” do you remember how annoyed you were? Because you feel so unwell but somebody just told you “you’re fine“? It’s annoying isn’t it. Imagine going through that every single day of your life, because well, you look just fine. 

I have people close to me who think just that. They believe I should go out to work, do more and socialise more. And the truth is, I physically can’t do it. I just can’t. I wish I could, I wish I could step back in time for just a day to be the old me but I can’t. This new version of Emily looks just like the old one, people can’t wrap their head around that and that’s why they believe I should do all of the above. But, unfortunately she’s long gone and I highly doubt she will return. 

Explaining how Lupus feels is extremely difficult, some days I can compare it to a sickness bug, but there’s days I can’t compare it to anything. I can describe some symptoms, for example, my head today feels like someone has repeatedly swung a pan around it. But, for the most part it’s too difficult to describe, it’s such a unique illness to each sufferer and affects everyone differently. The levels of pain are different, sometimes it’s dull, sharp, throbbing or a mixture and sometimes it’s an unexplainable pain that even I can’t detect what kind of pain it is – it just hurts. 

Lupus opens you up to a new kind of loneliness. Although I have stated that my father and I share the same illnesses, we feel it differently. There is nobody around me who feels the exact same. I’m surrounded by ‘normal‘ people who say “they understand” and I appreciate the support but they don’t. I’m sorry if that sounds ungrateful and blunt, but that’s the truth. It’s like saying to an amputee “I understand”. 

It does nothing but anger me when I see people judging me. You can’t judge someone based on appearances or how they act. Yes, you see me smile but you’re also seeing me smile through pain. Yes, you see me out of the house, but I can’t stay confined to the same four walls 24/7 and when you see me, I’m still in pain. You’re looking at my life from the outside, you don’t see me curled up crying because I don’t think I can take anymore. You don’t see the dark cloud that’s constantly above my head. Although I say “it’s okay, I’m okay” quite regularly, I’m not okay. I have fears, in fact I have regular fears that something terrible is going to happen to me. I hand on my heart firmly believe I won’t live to a grand old age…there has been nights that I have had such high anxiety over the pain I was feeling that I thought if I went to sleep I wouldn’t wake up so I stayed awake all night. 

That’s the harsh reality of my disease, so please, do not judge me based on how I look or because I’ve had Lupus for nearly two years so I should be back to my normal self by now.

“There’s nothing wrong with enjoying looking at the surface of the ocean itself, except that when you finally see what goes on underwater,you realize that you’ve been missing the whole point of the ocean. Staying on the surface all the time is like going to the circus and staring at the outside of the tent.” – Dave Barry.


7 thoughts on “From the outside looking in

  1. Hiya.. are you coming over to see your grandad soon? I’d like to treat you with Bowen. It’s not a miracle but… it may help you. It cannot harm you but it may boost your immune system. My name i’s Heathery and I know grandad through tai chi. Take care hope to hear from you soon 😊😊 x


    1. Hello Heather, I am coming to see my Grandad this weekend. Unfortunately I can’t accept your offer as my immune system is too strong and it sees everything as foreign and attacks. The treatment will cause more harm than good. But thank you anyway for thinking about me. X


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