Someone asked me a really great question this week. She asked me if, when describing my MD, I ever told people I “suffered” from MD. I’ve been asked a lot of things about my MD in my short time on this Earth and I’ve thought and analyzed many many different aspects of it. This was one thing I’d never been asked or really thought about before though.

The straight up answer is no, I never use that exact word when telling people about my MD. I usually just say I have muscular dystrophy. So then I began to think about the idea of suffering. Would I qualify myself as someone who suffers from my disability? The not so straight up answer to that is the majority of the suffering I’ve endured because of it was of my own doing. The sadness, the isolation, the beating myself up for being different…that was all self-inflicted suffering. It’s a tough thing to deal with, there’s no way around that, and I was just dealing with it the only way I knew how in my youth. I hadn’t gotten to the point of being able to accept it even a little bit yet so I suffered a lot.

But in terms of the physical, I really suffer very little, and for that I’m very lucky. I have pain after I fall and my back bothers me every now and then (especially when I’ve had to bend over too much or stand for too long) but I don’t have the extreme pain other people have. I don’t have the muscle degeneration. I’m able to live pretty much fully independently. So I definitely would never say I physically suffer.

As for the emotional suffering, it all lies in perspective. How I choose to look at the cards I’ve been dealt. How I choose to respond to being different or have different abilities than other people. My mind can be own prison sometimes so it’s a matter of breaking out of that and not letting myself suffer. That’s not to say never feeling sorry for myself again or getting upset at my MD from time to time; those are just normal human emotions when it comes to this type of thing. But I don’t have to let the suffering get so great that I let my MD define my life or let my attitude tear me down.

I’m just a person living with MD and doing my best to make the most of that life. Thanks for the question Lindsay 🙂

8 thoughts on “Suffering

  1. Hi Jackie!

    I just wanted to thank you for the perspective and honesty that you shared in this post and throughout your blog. I am an MOT student at Loma Linda University, and appreciate your vulnerability that helps us future clinicians understand just a little bit more about MD. I agree that our attitudes have the power to drastically change the state of our minds, and also that the self-inflicted suffering you refer to is something everyone struggles with. You have given me a lot to reflect upon in your posts, so thank you for that! I hope that you continue to thrive and experience the fullness of life each day!

    Amanda Lee

    1. Hi Amanda Lee. Thank you so much for the kind and encouraging feedback! It’s funny because vulnerability is something I’ve had a really hard time with in life. It wasn’t until that I started blogging that I started to really open up about my experiences of living with MD and people have reacted so positively from friends to complete strangers which is such an amazing feeling. It’s even more rewarding when my ramblings help another person or make people think so that means I lot I’ve given you a lot reflect upon 🙂 All the best to you!

  2. Hi Jackie! thanks for being so optimistic. We need more people like you here on earth. 🙂 Despite having muscular dystrophy, you’re still living life to the fullest. I really admire that. Of course there are times that we feel sorry for ourselves because of this and that. However, the main question is, are you able to stand up and move on with life or are you going to hide in a corner and not doing anything about it? The human brain is so amazing, we decide who we want to be. Keep it up and be positive because you are a powerful woman!

    1. Hi Christine! That’s very sweet of you to say! I wish I could say I was always as optimistic as I am when I write my blog posts but I definitely try to stay positive as often as I can, even if I have to kind of talk myself into it with my blog 🙂 I think I hid in a corner for a long time. I just wanted to blend in with everyone else so I was quiet. I sat in the back of the class in school. I never wanted to do anything where I had to go up stairs in front of people (though I still managed to make it through high school choir and those terrible risers!) I lost my job back in 2012 and that was kind of a big turning point. Though that was certainly a stressful time, I was able to clear my head and really focus on myself and my feelings about my disability (that’s when I finally started blogging about my disability regularly for the first time. This actually started off as a travel blog instead!). So I like to think that’s when I came out of the corner 🙂 I still have days when I want to hide there sometimes but I think what really matters is most days aren’t like that. Thank you for your positivity and encouragement!

  3. Hi Jackie,
    I appreciate your thoughts on whether you consider yourself “suffering” from MD. I actually wondered that myself. Maybe that differs for a lot of people with MD, but I can only imagine the emotional pain that comes along with it. I really admire how you were able to fight through the negative thoughts and brought it to a positive light. Thank you for sharing your experiences! This gives us as future therapists a clearer picture of what an individual with MD may be going through.

    Thank you again!
    Jessica Lee

    1. Hi Jessica Lee. You guys are all doing an amazing thing going down the OT path and I really admire that so if what I write here can help you all even in the slightest for your future practice, then I’m ecstatic! Unfortunately for a lot of people with MD that have Duchenne or another type of very progressive and often fatal kind of MD, I’m sure it’s immensely painful not just physically but emotionally. There was an amazing little boy (who I actually wrote a blog about on here at one point) named Mattie Stepanek. He had Duchenne MD and died at a very young age but he was one of the most enlightened and compassionate people I’ve ever seen. His words and poetry are forever in my mind when I start to have a pity party about my situation because he was going through so much more but always had a smile on his face and love in his heart. The human spirit can really be an amazing and triumphant thing, even in the face of extreme adversity.

  4. Hi Jackie!

    Thank you so much for giving us a little glimpse into your world! In regards to your post, I agree with you, it really is a matter of perspective. I love how you said,

    “My mind can be own prison sometimes so it’s a matter of breaking out of that and not letting myself suffer.”

    As someone who struggles with depression and anxiety, I can definitely relate to being a prisoner of my own mind. Prayer and putting my thoughts in check has helped me reshape my perspective. It’s true that emotions will get the best of us from time to time and that we don’t have to let them get so out of control that they define our lives, but at times… they do.Having a strong support system helped me not seclude myself during times of trouble. I have a habit of withdrawing when life gets tough and I tend to push people away, but I thank my friends and my family for always being there. The moment they see me begin to withdrawal, they make all the effort to reach out. I felt a lightbulb come on as I read through your articles and just wanted to say, thank you for this beautiful reminder. When I see my patients in the clinic, it will be important to validate their emotions and their experience, but it will be equally important to help them establish a strong support group, healthy coping skills, and provide their caregivers with emotional support as well. Thank you for sharing your experience with me and my classmates! Peace be with you.



    1. Hi Eli. Thank you so much for your honest response. I can completely relate to withdrawing when things get hard. I do the exact same thing. And for most of my life I put up a big wall between myself and others because I didn’t think anyone could possibly understand what I was going through with my disability or I didnt want people to shun me because of it so I just closed myself off. The mind is a very powerful thing, sometimes in good ways and sometimes in bad. I’m glad you’ve found methods to help take you out of the bad and that you have supportive friends and family who reach out when you start to withdrawal. Having a good support system can make all the difference sometimes. I’m so happy what I wrote gave you a lightbulb moment too. Those are my favorite! All the best to you!

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