A Mother's Perspective
Last updated: April 2023
In this installment of my interview series, my mom! My mom has been absolutely amazing through all this. She’s been my caregiver for the last 3.5 years. She’s missed countless days of work to take me to doctor's appointments, surgeries, and just to help me through the day. She’s been there to lend me legs, to help me eat, to just listen as I cry from it all, or from the pain. She’s seen the absolutely worst of this disease, and the days I’m semi ok. So, I wanted to know how she’s handled all this, how she’s felt.
Without further ado, Here is what she had to say:
Asking my mom about chronic illness
1) When my health first deteriorated, how did you handle or adjust to that?
I started looking for doctors that could help. As a mom, I had to do something.
2) How do you feel now, after a decade of my health being how it is?
I’m exasperated that no one has helped, or caught some of this sooner. Catching it sooner could have prevented surgeries. It makes me angry that so much was ignored for so long.
3) Have you felt overwhelmed? If so, how do you deal with it?
Yeah I get overwhelmed. You got sick, and no one has been able to help you. I just deal, I'm a mom, it’s what we do.
3) Have you ever felt helpless?
Yes. A Lot of the time I've felt helpless.
4) What is the hardest thing you've had to face in dealing with my health?
Watching you deteriorate and go through all the surgeries. It’s been really hard.
5) Do you prefer me to shield you from the bad days, or disease progression? Or do you want the truth of how things are?
The truth. Don’t hide it.
6) Being a caregiver to your adult daughter, did/do you ever resent the role?
7) If you could give parents new to this any advice, what would it be?
Fight like hell to find doctors that listen. Advocate for your child. Remember second opinions are ok.
8) If you could tell me anything about how you've seen my struggle with my body, what would it be??
That I'm proud of you.
9) Do you know how much I love you, and all you've done for me?
Yes. I love you too.
Leaning on each other
Parents do what they have to because they love us. They guide us, challenge us, and lead us. They are who help shape us. Whether you’re a parent, or a warrior of a chronic illness, share your emotions. Share how this has been for you. Open that line of communication with each other. Caregiver and patient, you’re a team. You rely on each other, for good or bad. Lean on each other, strengthen each other. Most importantly, love each other.
It’s not always negativity, or sadness, or anger. There’s days of a plateau, days of good, sunshine and energy. Then there’s the storm clouds, the thunder and rain of anger and sadness. Don’t lose yourself in the storm clouds. Don’t shut yourself off. Lean on each other. Remember, the sun always shines after the storm.
How well do you feel you manage your chronic hives?