Tuesday, March 4, 2014

Family & friends need to understand the issues we face

When it comes to living with a disability I am sure I am not the only one who has to deal with people in our lives who refuse to take the time to learn even a little bit about the issues we face. I believe it is especially important for our family and friends to better understand what we might go through on a daily basis. This is one of the main reasons why I started the My Becker’s Story blog. Now it must be known that I am not looking for sympathy by sharing my story just a little understanding. Honestly long for everyone in my life to one day fully understand what it means for someone to live with Becker's Muscular Dystrophy. The first thing I would like them to know is that it causes progressive muscle weakness. Which means I will slowly lose the ability to do some things most people take for granted. Simple things like climbing a set of stairs, getting up from a chair or even walking. Still today there are those out there who simply can't understand why I have such difficulties doing things other people do without even thinking twice. Now before I go any further I need to make it clear that despite having BMD I am at a point in my progression where I can still walk - though I do face a few difficulties with climbing stairs and lifting heavy objects. At this point I could actually be considered to be living with a hidden disability. Sadly even in these days and times many people are still making the mistake of automatically assuming that people with disabilities are much older people who use canes, walkers and wheelchair to get around. These are the types of people who have trouble understanding the issues those of us living with hidden disabilities face. This is when the famous old saying don't judge a book by it's cover needs to come into play.

Why it is important for family & friends to understand the issues we face?

Is this really too much to expect from the people in our lives? After all if they don't spend a lot of time with us how can I expect them to understand any of the difficulties we face? To be honest there are people in my life who have no clue as to why I have difficulties climbing stairs or doing some things most people can do with little to no effort. The truth is many people take the everyday things they are able to do for granted. Most people couldn't even imagine losing the ability to climb stairs or walk long distances. But how can I really expect them to understand what I am going through when they aren't there when I am having a weak day or when I slip and fall then struggle just to get back up off the ground. The point I am trying to make is that it's a little frustrating when some of the people in our lives refuse to take the time to understand what we are going through. Sure there are people who might be wondering why this is so important to me. Especially those who live their lives saying that I simply shouldn't care. Sure it might not matter when it comes to complete strangers but when it's comes to the people in our lives I believe this is very important.

What frustrate me the most about having a hidden disability.

When it comes to my frustrations part of the problem is that we live in a world which is obsessed with judging people by the way they look. So when it comes to people with physical disabilities the general public expects to see some visible sign that you have one. So if they don't see you using a cane or some other form of a mobility aid they automatically assume that you must be fine. This is a major source of frustration for many of us who don't fit some peoples stereotypical view of people living with disabilities. I pretty much face this issue every day especially when it comes to using accessible parking spaces. I actually remember a time once when I parked in an accessible parking space and when I returned found a note attached to my windshield. Some person actually took the time to write a note telling me that I had no right to park there as these spots are reserved for people with disabilities. It’s in these moments I am blown away by the level of some people's ignorance. And it's even worse when it comes from people you know. That is why I wish everyone I knew understood even just a little about Becker's Muscular Dystrophy. Let's be honest many of us actually do care about the way that people think of us - especially when it comes to our family and friends. Maybe others have reached the point where this doesn't bother them so much any more. But I can only speak from my experience and I know that there are others out there who feel the same way as I do. Those who may be able to relate are those who have had people question what you do all day. Especially if you are no longer working. I have actually heard stories from people who say that some in their families simply believe that they are lazy or just pretending to have a disability. They have expressed feelings of being upset that anyone would view them in such a negative way. At this point in my progression I can fully understand where they are coming from. Now sure this might just be an issue those with hidden disabilities but I am sure others living with progressive medical conditions can relate. When it comes down to it all we really want is for the people in our lives to better understand the issues we face not to gain sympathy but just a little understanding. After all we are good people who aim to live our lives to the fullest no matter our limitations.

So if someone you know is living with Muscular Dystrophy or any other condition please consider taking the time to learn more about the issues they face.

Related Posts:
My personal story growing up with Becker's Muscular Dystrophy ,
Living with Muscular Dystrophy and dealing with "Weak Days" ,
A look at the most Challenging part of my Day ,
Living with BMD and difficulties using Stairs ,
Living with a Disability & Suffering a Work related Injury &
Muscular Dystrophy Perspectives: Brad


  1. Hi Brad. God bless you for sharing this post and your entire blog just looks brilliant. I am an auntie to three lads who have just been diagnosed with BMD .. and I feel your blog will be a great resource for us ...
    We all want to know what to do to support and encourage our boys, and your blog sets a good tone of positive outlook coupled with real advise about the practical issues they will face.

    I will be back, for sure, and I have shared this link with their older sisters so they can start to get their heads around it too. Thank-you so much.

    1. Great to hear from you, so encouraging to hear that sharing my story is helping others. I hope the boys are doing well.