When chronic pain permeates every day it is difficult to make plans or have the courage to go places with which you are not familiar. Planning with friends in advance becomes more difficult over time. Initially others understand if you have to cancel due to unexpected pain or an uncooperative body. However, if rescheduling becomes a habit, others begin to feel that there is no reason to ask you to do things. They expect that you are just too sick to do anything. Once your friends and family begin to send you this message, it is all too easy for you to believe it yourself.
Even if you feel well enough to go somewhere, it is difficult to venture into the unknown. I learned two things over the last five years. First, if you do not look like you need assistance, everyone assumes that you don't. People will curse at you, if you are walking too slowly in front of them. They will huff in your ear as you hold a rail and take the stairs one step at a time. Attendants who are hired to work public events will even refuse to move as you approach them holding the railing and they have just watched you limp up the stairs. It is an imposition to the cashier if you ask for a drink tray when you only ordered two drinks. After all you clearly have two hands.
When you are already dealing with pain, frustration over the fact that you cannot do what you once did, and the possible embarrassment that may come if your body does not function the way you expect it to, bad attitudes from those who have no idea how you struggle to do things that they do not even think about is just too much to deal with.
Secondly, I have learned that accessibility for the disabled is never at the top of the architectural design list. In fact, it is on the “we are only including this because the law says we have to list”; therefore, lets hide it as best as we can. Understandably, public areas must be built to accommodate the masses and the majority. The problem is there are so many who have disabilities that do not appear to be disabled that designers and lawmakers alike do not realize the scope of the needs.
It is great to make a door that is wide enough to accommodate a wheelchair. However, if that door is too heavy to be easily opened by a person with chronic pain or muscle weakness, and there is no automatic push button, the ADA access does not really serve its purpose. If stairs are difficult for you, ADA requirements provide a ramp for access. There is no requirement as to where that ramp is to be located. Therefore, often you may have to walk to the other side of the building to access the one ramp. The additional walking distance may be equally or even more difficult than the stairs.
Every building falls under various ADA requirements based on when it was first built and if there have been any significant improvements that required a permit to complete them. Many owners will actually avoid making improvements to their buildings that would then force them to comply with updated ADA standards. Venturing out into public areas means that you will have to constantly choose options based on the greater impact to your body, because there is no good option for you. Just going out into the world is exhausting, and then having to use the additional brain power to make so many decisions along the way is even more taxing. Over time it is way too easy to begin to think why bother.
With this list of reasons, it seems that the benefits may not outweigh the problems of venturing out into the world. I certainly fell into this trap for some time. While you may not be able to venture out often, there is something to be said for enjoying events with family and friends. There is joy to be had, and you deserve to experience this despite the issues you face or the opinions of those who do not know any better. Caring for yourself requires that you care for your body, mind and soul. Occasionally venturing out provides benefits to the mind and soul that make the compromise to the body worth it all. In my next addition, I will share my venture to the ballpark with my family and discuss the positive aspects I discovered along the way that made the effort worth it.