How do you tell someone else what it’s like to live with a chronic illness? It’s much like having a baby – you have to experience it first.
Those of us who have been blessed enough to have children know the complete joy that one has for them. The unbridled love we have for these crazy offspring seems to defy logic to the point that we would actually throw ourselves in front of a herd of stampeding water buffalo to protect them. The thing is, however, people who’ve not had the blessing of having children don’t understand this complete lunacy. They can’t understand how one person could love another to such an extent of complete denial of oneself.
I tell people that it’s impossible to let someone else know what it is like to have a child and appreciate the experience until that person has been blessed with having one themselves. Until that point of hearing the newborn cry pierce ones heart as he is catapulted into the world, it is simply impossible to describe the overwhelming feeling. There is no frame of reference for that person to relate to… having a kid can make me what – do crazy stuff because of love? That sounds dumb and illogical.
This, in many ways, is the same challenge people face while trying to explain to others what it is like living with invisible chronic illness and pain. Unless a person has actually had to live through the sentence of chronic pain or illness for an extended period of time, there is no frame of reference – people just don’t understand.
I’ve found that I’m constantly trying to defend myself, my wife and her conditions to those who are skeptical. I’m met with a lot of blank stares from faces that can’t compute what I’ve described our daily lives are like. To most people, what my beautiful bride has to suffer through on a daily basis is unfathomable. To us, it’s our life. It doesn’t seem to register with people that it doesn’t go away and we live our lives in a daily fog as we battle through the pain and all the other things that are affected in a family that is forced to deal with their reality of chronic illness and pain. The suffering simply doesn’t go away. We have hope and faith through prayer that she will someday be healed, but until that time we need to live through and hopefully see the light at the end of the tunnel.
I’ve asked my wife what one specific pain in her body feels like, as she has many. She said imagine that you’ve never gone to the gym to work out and then one day simply gave it all you had for about 2 hours. The next day, one simply can’t move and their body is screaming out for relief from the incredibly sore muscles. Imagine having that every day and there is nothing you can do about it. Another pain my wife lives through is explained as a very bad sunburn that appears at random places on the body without warning. Another is what I’ve termed a ‘body migraine’ where the body and muscles simply freeze in pain coupled with a migraine headache. Imagine that these all happen at the same time. Taking a simple pill doesn’t fix the issues as there is now the dynamic of potential nasty side-effects. Sounds fun, doesn’t it?
So, the reason why I’ve compared living with chronic illness to having a baby can be boiled down to one word – perspective. If someone has never had any more pain than bonking their head on a cupboard door or stubbing their toe, they don’t understand chronic pain. They understand an immediate pain that will most assuredly disappear within a few minutes and perhaps be an annoyance for a day or two – then the pain is gone. I trust the next time you know of someone who has a chronic condition that you may understand a little more what they fight through on a daily basis and show grace.
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