A Sister's Perspective
For this installment, I wanted to hear how this impacted my younger sister, Ashley. When I got sick she was about 21/22 (we’re 4 years apart). Just figuring out her own life. And here I come through like a bulldozer throwing curveballs.
Without further ado, here is my sister’s interview:
1) When my health deteriorated, how did you handle or adjust to that?
I was upset, and turned to battling an addiction. (That I've overcome).
2) How do you feel now, after a decade of my health being how it is?
That I'm always so scared you’re going to get worse and I'll lose you.
3) Have you felt overwhelmed? If so, how do you deal with it?
Yes. I normally talk to you or mom to help reassure you’re going to me ok.
4) Have you ever felt helpless, or upset as my sister that I can’t always do things?
Yes I feel helpless that I can’t do anything to make you better. I never get mad that you can’t do anything.
5) What is the hardest thing you've had to face in dealing with my health?
The fact that I'm so scared I'm going to lose you and have to bury you. It terrifies me.
6) Do you prefer me to shield you from the bad days, or disease progression? Or do you want the truth of how things are?
No, don’t hide or shield me. I want to know the truth of everything.
7) If you could give siblings new to this any advice, what would it be?
Don’t treat them any differently. Take every day as it comes. Be very understanding about your bad days.
8) If you could tell me anything about how you've seen my struggle with my body, what would it be??
I’m proud of how hard you’ve fought, that you never give up. That you haven’t let your illness become your identity, that you're still confident, despite your scars and stuff.
9) Do you know how much your support and love have meant to me in the last decade?
No. You can tell me now though. ;)
Explain what we can and can't do
I was not prepared for how emotional her answers would make me. Seeing my sister’s perspective was hard. I didn’t know just what she went through as well. I know I've tried to hide how bad things have gotten from her at times. I never wanted to be a burden to her, or burden her with it all.
Especially as the older sister, I wanted to shield her from it. I think we all try to hide things from others, especially our siblings (definitely if they’re younger), to protect them, to not feel like a burden to them. However, maybe that’s leading to more anger, more miscommunication. The potential loss of a relationship. We should open a dialogue with them about it. Explain what we can and can’t do. Most importantly, make memories together in ways that we can.
Who our health affects
I know our health can take a lot from us, but it’s not just us that it’s affecting. It affects those closest to us as well. We need to adjust and adapt to what we do to have spoons to make these precious memories with those closest to us. I know it’s not easy, I know there will be trials and tribulations. There will also be laughter and joy. Our siblings don’t need everything. They need us, they need our attention, and time. Simple things can make great memories.
Have you tried biologics as a method of treatment?
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