To the People Who Walk With Me on My Chronic Illness Journey
Dear People in My World,
I just wanted to drop you a note to say thank you.
Thank you for knowing, for taking the time to know a bit about the disease I have. Thank you for knowing that having Chronic Fatigue Syndrome doesn’t mean I’m just tired all the time. Thank you for knowing that the nausea is constant, that I am out of breath lying in bed, that I am dizzy all the time and that my body just hurts… and that this is on a good day. Thank you for knowing that the person you see in front of you, me, is constantly living a lie to exist in this world. Knowing that the well-made-up, well-presented me actually spent ages putting my makeup on to cover the bags under my eyes, or that I needed to lie down after having a shower, and after getting dressed and again before walking out the door.
Thank you for your understanding. Thank you for understanding that even though I might not talk about it often or if I look like I am getting on with life, I’m still unwell. Thank you for getting that this is what life with an invisible illness is all about. Thank you for understanding that I’m doing my best and that to do my best comes with sacrifice, pain and heartache, because to meet that deadline or to go out tonight means tomorrow may be spent in bed. Thank you for seeing that each and every task I do in a day needs to be measured and weighed to see if it is worthy of the energy required.
Thank you for asking. Thank you for asking if I’m actually okay and listening for a real response. For specifically asking about my needs, and what practically you can do to help. Thank you for asking what time you can come over to fold my laundry or bring me a meal, because without that my clothes will live in a washing basket for weeks, or I won’t bother with dinner because eating the meal itself is exhausting, let alone the thought of preparing the food.
Thank you for advising. Thank you for seeing into my life and looking at where I am and my situation and, out of the care you have for me, speaking into my life. Thank you for the fact that this advice is specific and well intentioned, not based on generalized statements or thoughts about the disease I have or the way I’m managing it. Thank you for offering advice only after you’ve walked in my shoes or spent the time considering my shoes.
Thank you for doing your best to continue to include me, even when time and time again I need to say no or cancel at the last minute. Thank you for picking me up and dropping me home, even when it’s out of the way. Thank you for dropping in for coffee or doing my shopping. Thank you for coming to sit on the couch with me and share a gluten- and dairy-free pizza (and not complaining as we eat cardboard)!
Thank you for listening to me through my tears when it’s all become too much. Thank you for listening to me explain the latest treatment or life plan. Thank you for listening to me complain, cry, rant and talk myself in circles. Thank you for decoding my word-finding difficulties and my constant brain fog. Thank you for remembering important appointments and checking how they went.
Thank you for encouraging me with your texts and your kind words. Thank you for encouraging me with small gifts and passing comments. Thank you for encouraging me to keep my eyes on heaven and grow in my joy within the pain.
Thank you for your compassion, your kindness, your joy, your prayers, your fun and your concern that shines through all of the above.
Thank you for being you.
Thank you for reading this.
Kate (the girl with the invisible illness)
A version of this post was originally published on Make It, Bake It, Fake It.
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