a letter to the world

May 12, 2015


Dear World,

I just wanted to drop you a note to say thank you.

Thank you for knowing. Thank you 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 survive in this world. Knowing that the well made up, well presented me actually spent ages putting my make up 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 having insight. Thank you for seeing that for 2 years I have been trying my best to live a normal life, to balance earning an income so I can still live independently, progressing a career, having a social life and enjoying friendships and hobbies, whilst having a rather debilitating disease. Thank you for seeing that living constantly in survival mode is doing nothing to help me. For seeing that each and every task thing I do in a day needs to be measured and weighed to see if it is worthy of the energy required. Thank you for seeing that taking time off work to care for myself now, is a blessing not a step backwards.

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, that I am still unwell. Thank you for getting that this is what life with an invisible illness is all about. Thank you for understanding that I am doing my best, and that to do my best comes with sacrifice, pain and heartache, as to meet that deadline or to go out tonight, means that tomorrow may be spent in bed. 

Thank you for asking. Thank you for asking if I am actually ok and listening for a real response. For asking how my walk with God is going, and for how you can support me with that. 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 that you have for me, speaking into my life. Thank you that this advice is specific and well intentioned, and not based on generalised statements or thoughts about the disease I have or the way I am managing it. Thank you for offering advice only after you have walked in my shoes, or spent the time considering my shoes. (Size 8 by the way!)

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 coffee or doing my shopping.Thank you for organising way more things than me, because the stress alone that comes with event planning is way worse than it ever was in my pre illness life. Thank you for coming to sit on the couch with me and sharing a gluten and dairy free pizza, and not complaining as we eat cardboard! Thank you for doing so much to bless me time and time again.

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, and cry and rant, and talk myself in circles. Thank you for decoding my word finding difficulties and my constant brain fog.

Thank you for encouraging me with your texts or your kind words. Thank you for encouraging me with small gifts or passing comments. Thank you for encouraging me to keep my eyes on heaven and grow in my joy within the pain.

Thank you for remembering important doctors appointments and checking how they went. Thank you for remembering how much birthdays and holidays mean to me and celebrating these with me. Thank you for remembering that holidays in particular are so so hard when you are unwell, and thank you for doing everything you can to bring joy to these events. Thank you for remembering to text me before 8pm with the next days plans, because you know I now go to bed way too early.

Thank you for being you. Thank you for continuing to allow me to share your life. Thank you for being real back with me. Thank you for allowing me to be able to bless you and encourage you in whatever way I can. It may not be in the way I used to be able to, but the heart of the love is still there.

Thank you for praying. Thank you for praying for me and with me. Thank you for praying for me when I can't pray for myself. Thank you for continuing to point me to our creator, and healer and Lord.

Thank you for your compassion, your kindness, your joy, your fun and your concern which shines through all of the above.

Thank you for reading this. 

Yours gratefully,

Kate (the girl with the invisible illness)

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