Guilt is a well-acquainted friend for anyone living with myasthenia gravis. Poor health often means that our participation is limited, our range of executable activities are restricted, and our energy levels sometimes feel non-existent. This does not only affect us but also those closest to us, and that is where the feeling of guilt finds its roots.
My mother is an exceptionally tough woman. Before I fell ill, she suffered many other blows in life and overcame each challenge that presented itself with grace and great effort. When her youngest daughter fell ill, she did the same thing that I would later learn is essential to living a deserving life: She kept fighting. To start with, she fought with doctors who made office politics my problem while my life was at risk. She also ensured hospital staff members were aware of the unpredictable nature of myasthenia gravis, and she spent hours fighting with the insurance people to get me the treatments I deserved. She did most of it while I was unconscious and recovering in my hospital bed. She shouldered on such great extent for me, and I never had to ask. (I could not even ask if I wanted to since my mouth was filled with drool thanks to weak bulbar muscles.)
Everyone fighting myasthenia gravis deserves to have someone like my mother accompany them on their journey. The only problem with accepting such selfless love is it comes at the price of intense guilt for not being able to duplicate the acts of kindness — both because the person does not need the same level of care and because you are quite simply not physically strong enough. It is difficult to express gratitude to people who care for you when you are so limited in what you can do for them. The guilt slowly but surely becomes a factor, and it may become a psychological problem if it is not dealt with.
While fighting any illness, it is important to look after your mental well-being as well as your physical health. I see a psychologist on a frequent basis to deal with the guilt of being ill and feeling like a burden to those around me. And if there is one thing I have learned from our sessions, it is that the people who stuck around to help you are not doing it so you can pay them back. They care for you because, in your way, you add value to their life — often in ways that you are not even aware of. The little things like acts of kindness and concern are extremely valuable to any relationship, and they are not always outweighed by “bigger” acts.
You are allowed to feel feelings, and sometimes these feelings might be guilt, shame, or sadness. It is OK to feel these things. It is normal. You are going through a lot. It is healthy to not have these feelings grow inside of you. Yes, they need to be acknowledged, but they must not be your only thoughts. Remember to look at the bigger picture of life. It is so beautiful. Never stop fighting.
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