The Impact of Doing My Treatment at Home Instead of the Infusion Center

For the past six months I have been doing Remicade infusions for Behçet’s disease at a infusion center near home. As a stay-at-home mom I loved that day out. I sat for hours in a reclined chair in total peace, recharging for the month. Then I would leave my disease at the door of the Abrahmson Cancer Center and go home and pretend to be a normal person.

 

Until I had to bring my sickness home with me. Insurance told me I would have to do my infusions in home. I thought, this is great. It gave me a much more flexible schedule to do my infusions. It wasn’t until the day before my first in-home treatment that it dawned on me what this really entailed. I wasn’t just inviting a nurse into my home to spend the day with me. I was inviting my disease into my home, to live with me every day.

Even on my good days I have to open my clothes closet and see the big bulky IV pole next to a big box of supplies they delivered. If I have guests over and they see it, do I have to tell them what it is? What will my neighbors think when they see I have in-home nurses coming? I am only 25! Then the worst realization of all. What will my son, who is just starting to speak and understand things, think of all this?

The shame has been one of the hardest things to deal with, and the most difficult thing to explain that has been brought on by my illness. On my bad days I feel guilt for not being fun and for staying inside all day. But feeling guilt for getting the treatment I so desperately need is all new to me.

I know many of these stories have an inspirational ending of how people overcame their fears and feelings due to illness, but this story does not have that type of ending. I’m still figuring it out, and in the early stages of accepting this new life change. And that is OK ! To be continued…

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via yanyong.