The things you don't see

Friends and family see us out. We look fine. Therefore others mistakenly perceive that we are fine. That is so far from the truth and that is hard for us to explain over and over. With chronic illness, many times what you see is not what you get. Here is a little behind the scenes with chronic illness, the things you don't see or maybe don't realize the reason behind them:

-- laying in bed doing nothing for hours before and after "going out" in order to survive that outing (MG/POTS/Lyme/Adrenal/Candida)

-- taking hours to get ready not because we are high maintenance but because we actually need rest breaks while attempting to get ready (MG/POTS/Lyme/Adrenal/Candida)

-- scheduling things every other day or even every two days, including doctors appointments or trips to the store, in order to give our bodies a break from the "having to get ready" part of the day (MG/POTS/Lyme/Adrenal)

-- sitting in the back corner of church and trying not to shake hands so to do our best to avoid catching any germs (immune deficiency could be by itself or as a result of another illness)

-- needing, not wanting, but needing to avoid church, social outings, etc. because our bodies literally cannot do more than the minimum of just existing today (MG/POTS/Lyme/Adrenal/Candida)

-- holding a child or pouring a jug of milk means we might not be able to use our arms later or tomorrow or for a few days (MG)

-- our heart racing 180 beats per minute (when the average should be around 60), blood pressure dropping and blood pooling to our legs, just while standing and talking to you or waiting in line at a store, which causes all sorts of other symptoms and thus the need to rest and recover after those "simple" tasks (POTS)

-- waking up drenched in sweat and needing to open the window in the middle of the winter and get an ice pack, minutes later absolutely freezing with the chills, repeatedly through the night and sometimes day, every night, every day (POTS/Lyme/Bartonella)

-- waking up in the middle of the night with air hunger or partial diaphragm paralysis gasping for a breath of air (MG)

-- wearing a soft collar neck brace to support the muscles that hold up our head because they can't do it on their own (MG)

-- wearing a cold mask on our eyes so that they stay open enough to see you or to drive or to read (MG)

-- others in our home needing to avoid perfumes, lotions, hair sprays, certain cleaning products and detergents, etc. because they make us have a very bad flare up (Mast Cell which could be related to POTS/Lyme)

-- while on facebook "wasting time" as others assume, we are seeking and giving support to others in similar situations who have in fact become our closest friends from a distance (any illness)

-- laying in bed while on the computer in order to rest our arms so we can actually be on the computer (MG) and keep our legs up so we can be on the computer with out feeling lightheaded (POTS)

-- asking someone else to open cans, bottles, sometimes even the fridge door, doors to stores, carry things, pour something, cook for us, clean for us, go shopping for us, drive us, etc. (MG/POTS/Lyme/Adrenal)

-- crying, yelling, getting angry, and then getting frustrated that that happened because we cannot control it and feel like something is inside of us taking over and we hate it (Lyme/Bartonella)

-- our feet are burning up, so so hot and it's impossible to ignore (Bartonella)

-- we itch, constantly, all over (Candida)

-- that picture we were standing smiling in- we were in so. much. pain. (Lyme/back problems)

-- as you are socializing, we are overloaded with every movement, every color, every noise, every temperature and feeling. huge horrible sensory overload. (may be related to POTS and/or Lyme)

-- having to ask everyone we are about to see if they or anyone with them is sick prior to seeing them, or if they have cats/dogs, smoke, etc. because it will cause a huge flare up/we will get sick/can land us in the hospital (immune deficiency could be by itself or related to another illness)

-- checking out the layout of a place we are going, how far away parking is, where the closest bathroom is, how many seats are available before deciding if we can go (MG/POTS)

-- the extra cost of paying hundreds to thousands out of pocket for treatment because the doctors who treat it don't accept insurance due to the huge controversy (Lyme/Bartonella)

-- the extra cost of needing to eat clean/non-processed because of how processed foods as well as dairy, gluten, sugar, yeast flare up our symptoms badly (multiple illnesses)

-- sore throats, plugged ears, painful sinuses, swollen glands, swollen lymph nodes, distorted vision, weak muscles, nerve pain, joint pain, weak tendons, nausea, dizziness, lightheadedness, trouble breathing, trouble swallowing, constant ringing in the ears, etc. etc. etc. (multiple illnesses)

-- the times we don't take pictures- repeatedly in the hospital, on oxygen, some on a ventilator, getting stuck with needles over and over, central lines placed in our neck/chest, surgery, feeling so incredibly jailed inside our own bodies and yet still trying to walk through life staying positive and smiling (multiple illnesses)

-- when others tell us you're glad we are doing so well (when we aren't) or asking what we do all day, or why we aren't working (if we could we would), or recommending this that everything when you haven't walked in our shoes- it's probably the 1000th time we've had that said to us and it's very hard to hear over and over. We just want your support, a shoulder to lean on, an ear to listen, friend who won't accuse or demean us for something we cannot control. (multiple illnesses)


These are only a few of the many things you don't see. But I hope this helps you better understand the different accommodations we have to make and why we ask you to make them for us. I hope this helps you understand that life with chronic illness isn't relaxing in bed all day everyday. It's a constant battle, draining, exhausting, painful, lonesome and very very misunderstood. Thank you for doing anything you can do to help us fight this fight. We appreciate it so much and wish we could do more to give back.