Being misunderstood hurts. Lets face it, many people out there think they know what the problem is or they make an assumption and offer advice; however, they either don’t see the problem at all or they only see a small part of the bigger picture. People who suffer with great pain or disability find these responses everywhere.
The greatest difficulty is not being pulled into a negative trap, and allowing those comments to nag at you. We are not going to collectively change the way people think or act, so our only course of action is to change the way we deal with some people and their comments.
First; consider how easy it is to mirror negativity. If a person makes a comment such as “Oh! You have MS? well it could be worse…” A first response? “wow what an insert expletive of your choice here.” This is not going to make you feel any better nor will it help the person learn a better more empathetic or compassionate response. Don’t be too quick to judge this person. They may not know or understand what MS is; no matter how many people they claim to know with the disease. People seldom admit to ignorance; on the contrary, ego will often cause people to exaggerate the truth.
Compassion is a truly amazing quality to have. If we practice compassion with everyone, even those for whom we previously felt contempt, we take down their defenses which allows them to learn and grow. It is very difficult to be superficial or egotistical in the presence of a benevolent or compassionate person. We tend to mirror what we are given.
Kindness does not mean allowing ourselves to become a doormat, but rather it means preserving our positive outlook. We are doing this to help ourselves as well as the difficult person we are dealing with.
Create a positive environment around yourself. If you present a negative side of yourself you are opening yourself to well meaning, unhelpful people. If you present yourself in a positive light, they have no where to go with their comments. The one thing we have control over at every moment of our lives is our attitude. We can choose to allow our circumstances to control our attitude or we can choose to control it. It is the same idea as smiling when inside you want to cry. Putting on a smile will; on occasion, change the sadness within even if only for a short time. Should a negative comment try to present itself in the conversation; turn that comment around. For example; I recently read in a forum about a comment made where a person with MS was told “wow, it sure is a shame you are at the end of your walking days…” Can you imagine? Now here it would be easy to be snide or angry but this person wasn’t. She was reserved. A great way to avoid a scene. Now I propose we take it one step further. Perhaps a response such as a smile; understanding that this person has no idea what MS is, and then something like “On the contrary, there is no reason why I can’t continue to walk for a great many more years if my fate should permit”. Leaving it at that. Should this person wish to learn, his curiosity might propel him into action, or your gentle response might be payed forward to the next person he meets with a disability who could be having a down day. Either way; this good deed leaves us feeling much more refreshed than pent up anger will.
Are we taking it personally? Perhaps it is personal. Perhaps this person has something they can teach us about ourselves. Are we emotionally charged? Are we angry with our situation and taking it out on a stranger because they made a thoughtless comment? Step back from the situation and think it through. Try not to let your mouth work before your brain has a chance to.
For those wondering “what should be said to someone who is suffering? I only wanted to help”. Compassion is once again the most amazing quality to have. Consider; if you will, how hard it would be to live in pain, to have no knowledge of what your future holds, to be scared and to wonder if you will lose control over some of your most basic functions. Now ask yourself, would you want to have the burden of telling someone how they can help? Would you want to feel that vulnerable? Instead, perhaps just do the kind act of making a meal, walking the dog, disseminating the updates to the family and friends so that the patient can rest. Tell them not to worry about contacting you, that you will check in from time to time but not be a pest. Ease their mind of things. Not sure what to say? Then say that! “I don’t know what to say, but I care about you.”. “Have you heard the latest gossip?” Don’t underestimate the power of changing the topic, it takes all of the tension out of the situation when done at the appropriate time. Don’t give advice unless expressly asked to, and even then do so in a general or vague manner so that the patient can still draw their own conclusions. Sometimes a patient will want to talk things out to help draw their own conclusions but giving direct advice can inhibit the outcome and cause resentment. Visit without visiting. Want to help while still letting them rest? Show up and tend to matters outside like watering the garden or shoveling the snow depending on the season. This allows them to rest and you to help without creating any burden to the patient. The bottom line is to be selfless. You are trying to make things easier on the patient without worry for anything in return. When you approach it in that manner, its likely you will not offend.