“What doesn’t kill you makes you stronger!” “The Lord promises never to give you more than you can handle with His help.” “You do not look disabled.” “Why do I have to pay for lazy freeloaders in society?” “They just want pain medication, I do not think they are suffering as bad as they think they are.” “What do you mean you need my help with that…you have always taken care of this stuff!?” I work all day and you expect me to help with housework when I come home?”
Above, a few shining examples of phrases offered or questions asked out of good intentions, frustration, ignorance, and/or just plain stupidity. When you are disabled it feels as if you are always required to defend your actions, choices, or inactions. Most of the healthy in society will expend volumes of energy pretending you do not exist. This is very prominent if you have an obvious physical ailment. People will not meet your gaze as if they might somehow catch what you have just by treating you as if you were a fellow human being and not an obstacle in their day. Due to the complexity of all relationships, I will attempt to limit the subject to a disabled person’s reactions to family, friends, and dumbasses in society and their reaction to the disabled person.
Okay, you have just begun to deal with all the medical, emotional, and psychological crap associated with living with a chronic disease and now you must learn how to keep your own relationships healthy despite all the changes. Moreover, you will now face a horde of people that range from well-intentioned folks to completely ignorant dehumanizing monsters. The transition time from “normal” to very “different” is long and highly stressful. People who love you will be lost and confused because they do not know how to fix the situation. They offer suggestion after suggestion to try this, that, or another thing that might offer a cure for what ails you. They strongly recommend that you get half a dozen second opinions until you decide that you have had enough. They too, must transition with you and when your world is falling in around you and you feel as if you are flailing in the dark trying to grasp something to halt your decent you are in no position to set the course. Some couples do not survive this time period. We, as human beings, are fixers and need to be able to face a problem and divine a solution. When a solution does not exist and we must then accept the inevitable truths we are shaken to the core. Everything we thought we knew as certain is no longer certain. Some of the plans we made together as a family may not be able to see fulfillment. Everybody who loves you will need to make a decision to support and love you or to flee the situation. Sadly, some spouses and/or friends tend to flee. The vow declares…”in sickness and in health…” but no one expects their ‘happily ever after’ to be disrupted by an illness. Family and friends will now have difficulty interacting with you especially as your lifestyle changes.
In the beginning you will continue to do everything you did before determined that nothing is going to change. You consider the feelings of those in your life above your own and agree to tasks or outings that you know you will pay for later in the degree of pain you suffer. Nevertheless, you will suffer in silence so as not to disrupt their good time. That may go on for years before you come to the realization that you cannot keep it up any longer. You are the one in pain, you are the one doing the suffering and you must start making changes. As it becomes obvious to both you and those around you that things need to change to accommodate your illness, the relationships will strain. The level of strain depends heavily upon you and how you are handling your illness. Having the initial pity party and then reserving the right to have one every now and again is fine but if you choose to live in the land of pity, self-loathing, and depression then you will become a very lonely person. Is this situation depressing and pity worthy? Hell yes, BUT neither of those factors will help you survive and thrive. Yes, things are going to change but those changes may be great opportunities that you had never dreamt possible. You may lose a few friends who cannot handle watching you get worse throughout the years. Fine, if they cannot handle it you certainly do not need them around whispering their doubts and fears in your ear. You have plenty of your own with which you must control. You will find inner strength that you never knew you had. Are you going to be strong 24/7? Ahhh, …no…who do you think you are superman? No one is strong all the time but you do need to be strict with yourself because once you barrel down that road of self-pity and self-loathing it is very, very difficult to get back. There are a billion valid reasons to stay in bed and bemoan your circumstances. When it hurts to sit up and swing your legs over the side of the bed it is then that you need to concentrate on a couple other reasons that are strong enough motivators to get your butt out of that bed. Every morning is a battle and whether it arrives in the am or pm is of little consequence but the status of victory or defeat is entirely up to you. Is that fair? No. However, it is reality and that is the land in which you must dwell because it is a waste of time and precious energy to indulge in the stream of thought concerning the unfairness of it all. You cannot afford to take a dip in that stream because it has dangerous undercurrents that will pull you to the depths. In the iconic words of that absent-minded blue fish, “Just keep swimming…”