Something that I think is overlooked with illness is how much it affects your family.
It wasn’t just my friends that I couldn’t see for over 3 years: it was my family too.
It was my grandparents, my brother, my sister, and to an extent, my parents.
Even though they might live with me, or know me better than anyone, my illness doesn’t give them a free pass.
When my siblings came home, I wasn’t able to sit in a room with everyone because it was too much noise.
Instead, I would have one visitor at a time in my room – quietly talking on a timer as more than 10/15 minutes was too much for my body.
Or when my grandparents drove down to see me, 20 minutes was still the max, before my mum got everyone out of the house and off to lunch so I could quietly recover.
Even despite all the precautions we took, I still crashed every time I saw a family member, and that was so incredibly heartbreaking.
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Heartbreaking because I couldn’t spend time with the people I love.
Heartbreaking because for nearly 4 years, I missed every dinner, every walk, every outing, every photo, every call, every FaceTime.
Heartbreaking because I could only hear family updates through my mum as she passed the information on in manageable chunks.
The reason I want to give awareness to this is I think it’s easy to assume even if someone is ill, or has severe fatigue, that doesn’t apply to their family or household.
I would get friends asking if they could see me, not realising I can only see one person a month, and that slot was saved for family.
Not realising holidays or events in our house weren’t social times for us: they were how many things can we plan *outside* the house so Evie can rest.
Not realising it was a continuous “you can’t come to our house because our daughter/my sister is too ill”.
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Of course, there is a light at the end of this tunnel.
I just had the most amazing few days with my brother home – chatting away and catching up on what felt like years.
Sadly I can’t tell you more about it cas my word limit is up, but for the first time in nearly 4 years, I finally felt like I could be a sister again.
And maybe soon, I can move on from being the sick child too, and just be Evie ❤️
(Originally posted on @mindfullyevie Instagram and Facebook)