Would it surprise you if I was to say the most basic emotions related to Muscular Dystrophy (MD) and other chronic illnesses was Guilt.
We all know that Guilt occurs when a person feels regret or shame in response to their actions (or inactions) in a particular situation. The feeling that they have gone against a moral standard. Common cause of guilt centers around feelings of responsibility or burden, physical or financial. This may be true for individuals who have the disease or the caregiver/s.
For example, a parent may feel guilty for bringing a child with a disability into this world. After recognising the impact of their condition and how it could alter their future. That impact on a family can be emotionally hard and very confusing. It’s definitely something I knew i didn’t want to let define me or my family.
I believe that if one explores and turns their weaknesses into strengths, then there are no weaknesses. In theory, I know it’s easier for some more than others. For me knowledge is Power so knowing everything I can about my personal MD was to better myself.
I made this decision because I never want/ed to be a burden on others, physically. I wanted to be able to remove the burden from my family and friends.
Another example is that an individual with a chronic illness may feel a sense of guilt or shame in asking for help. Although I’ve had my diagnosis near on 19 years, I’m still stubbornly reluctant to ask for assistance, even if I know it can make things easier.
I can struggle with muscle fatigue for various reasons, like lack of sleep or working on my laptop all day, then when it comes to feeding myself I struggle to lift my arm and instead of sometimes just asking for help I will persistently keep trying making the situation worse. Using energy I don’t have! Sometimes finding the courage to just say ‘please help me’ can be hard. My PA’s (personal care assistant) will remind me that, that’s what they are here for to help support me by taking that pressure off my body.
Although over the years I have improved, there will always be that little bit of stubbornness but I think that healthy – primarily because you don’t want to feel inadequate – I would recommend starting small, whatever that may be, and then slowly building up to something more.
Another common reason for feeling guilt involves committing to or planning for various events. As someone with MD I rely help for the basic of needs. Like lifting a drink, feed or toileting. That in itself can take planning around accessibility and a toll on my mental health. The easiest option is to sometimes say “No” to protect or benefit others, and then the feeling of guilty in letting people down. This feeling is not unwarranted, but I must appreciate myself, which includes my functional abilities, and not focus too much on my disabilities.
I have made the conscious decision not to let a muscular dystrophy diagnosis define me, but rather define what an individual with MD can do.
While it’s important to appreciate abilities, we must also recognise our limitations. Then we have two choices: Avoid the obstacle, or confront the obstacle. A problem will never go away if you ignore it, so I am facing the future. If I avoid obstacles, I am avoiding the future.
Guilt is often centered around fear, anxiety, depression, sadness, and possibly even anger. Unfortunately, in addition to altering one’s emotional well-being, these feelings can also alter the way a person’s mind and body functions. Overall, guilt is a normal feeling, but it’s recognising that we can only learn from the past, not change it.
Accepting the past can be a part of accepting yourself, and it’s vital in understanding your purpose in life. Your life may be different, but different doesn’t have to mean “bad.” .
Until next time. Tell me what you think?
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