I’m Learning to Let People In

I recently started enzyme replacement therapy for Fabry disease at the children’s hospital where my son has been receiving the same treatment for a little over a year.

The infusion days have been going well, aside from it taking up our entire day. However, I have struggled after treatments because I can’t do anything the next day. My doctor told me that I might feel tired after receiving treatment and the following day. But I had no idea I would be unable to stay awake.

As a mother of two, it is hard for me to accept that I can’t do something for my children or work around the house because of the exhaustion I feel after the infusions. The fatigue has affected my life in other ways, too. Because I haven’t been able to help out as much at the kids’ school and have had to decline invitations to social events, I feel it necessary to inform more people about my diagnosis.

Aside from my friends and family, I have not talked about having Fabry. I have a hard time telling acquaintances, such as the other mothers at my children’s school. I find it difficult to determine how much information I want to share or how much they even want to hear.

I have a harder time talking about myself than about my son. He misses a fair amount of school to get treatment, so several of his friends’ moms have asked questions. I simply tell them that he has a chronic illness and receives treatment, but I don’t tell them that I do, too.

I guess I’m worried about what people will think. I don’t look sick. Until a year and a half ago, I didn’t even know I was sick. I suffered from symptoms of the disease my entire life but never knew what was causing them. I just dealt with it. Nothing was severe enough that I couldn’t manage it. Now, I feel like I have to continue to pretend I don’t suffer from these symptoms, because if they didn’t affect me before, why would they affect me now?

I do not want my son to feel that he can’t talk openly and honestly about his day-to-day struggles. I don’t want him to suffer silently because he is worried about what someone else will think. Some days we feel perfectly healthy and live normally. On other days things are bad. The symptoms of Fabry disease can appear at any time, and I need to show my son that it is OK to let people know when he feels unwell.

Living with a chronic illness is new to me, even if I have had it my entire life. I am hopeful that by letting people in and talking more openly, it will help my son and me to heal.

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