Learning to Make My Voice Heard

I have always been the type of person to go out of my way to make sure I don’t inconvenience others. Raised to stand on my own two feet, I prefer not to impose my feelings or needs on anyone else.

But I have learned in the past year that there are times when it is unavoidable. My child and I both have a chronic illness. I have so many questions that only a professional can answer. I have many concerns about the choices I’ve made. I need them to be heard.

I had to learn the hard way that I can’t stay quiet for fear of being bothersome. I knew that home nursing wasn’t working for my son, but how was I supposed to ask to go back to the infusion suite when I had pushed so hard to go home? I knew the nurse wasn’t the right fit for our family, but how could I tell such a nice person we wanted someone else?

I wish I had acted on my instincts right away. It would have saved stress, tears, and discomfort. As it turns out, it is common to employ multiple nurses before finding the right fit. The nurses know this. I also was surprised to learn that some families do better in the infusion suite. I am relieved, and I only have myself to blame for being afraid to voice my concerns.

I’ve reached out to others living with chronic illnesses. The No. 1 thing I’ve learned is that you must advocate for yourself. Assuming that things will simply work out won’t get anything done. Most importantly, my questions and concerns matter. If I don’t ask, I won’t ever have the answer.

If it weren’t for my son, I probably wouldn’t have become the bold, persistent version of myself I am today. I would have let my health fall by the wayside to ensure that I wasn’t a problem for anyone. It’s been positive for me to worry less about what other people think, and to stand up for what my son and I need.

It isn’t easy for me to be assertive, but I know this is how I must be now. And that is OK.

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Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Fabry disease.