by DJ Kimble
about the author:
DJ Kimble is 41 years old with Duchenne Muscular Dystrophy, a progressive muscle wasting disease. Thank you, DJ, for taking the time to share your valuable expertise and insights with us. To contact DJ, email him at DJ.Kimble@FamilyFriendsAndDuchenne.org
The Guilt that Comes with Duchenne
For many, Duchenne Muscular Dystrophy seems like just a physical disability, or just a muscle disease. For those of us with Duchenne, though, it’s much more than that.
Yes, it’s true that many of us do struggle with the physical aspects very much. But to be absolutely honest, how those losses affect us emotionally is where many of us struggle the most.
That’s because our emotions are what we feel each and every day, in every moment, and in every aspect of our lives, and we never really can get away from them. They’re there when we wake up, when we go to bed, and they’re even there as we sleep.
The reality is that we know that our families – especially our parents – wouldn’t have it any other way. But for many of us with Duchenne, when we see you overtired, when we see you struggle physically, when we see and hear you crying and arguing, and when we see you have to give up on those things that you were looking forward to – such as a job that you enjoyed, a dinner with each other, a moment with friends or just to have time for yourself to collect your thoughts before being needed again – we begin to question, we begin to blame ourselves and we begin to feel guilty. Guilty for having Duchenne.
For me, it’s usually a passing thought, a wonder, a moment of reflection, or wishing I could improve everything. At other times, the guilt that I carry becomes more consuming and I start to blame myself for every little thing. I begin to question every moment of my life. I begin to doubt myself in every way – my worth, my dignity, and who I truly am as a person. I feel the effect that my care has on my mom, and her ability to do the things that she wants to be able to do. I do genuinely struggle with these feelings in ways that are beyond words.
As much as you try not to let us see what Duchenne does to you, we do still see, hear and feel all of your tiny little moments. We witness your sighs, your yawns, your aches, your pains, your tears, your red eyes, your frustrations, and how you hurt so deeply at times. We see and feel all these emotions that our families struggle with and we often feel responsible for these feelings, even if we aren’t truly to blame.
So, yes, the physical aspects of Duchenne are hard, but many of us just accept that part of our lives. We adapt, we continue living life, and we try to enjoy it as much as possible.
It’s the doubt, the blame, the guilt, the apologies for needing so much help that are the real handicaps. These… these are the burdens of the disease that perhaps weigh us down the most.