I’m participating in a social media challenge started by Remember The Girls this week! The aim is to raise awareness of X-linked genetic disorders and specifically to talk about our own experiences of having an X-linked disorder as a woman. I will post 7 blogs throughout this week, with the below themes.
Day Four : My Greatest Challenge
This prompt is the easiest for me to answer but also the most difficult. My greatest challenge is guilt.
Guilt is heavy. It’s relentless and suffocating.
There is no escaping guilt.
It whispers to you in those quiet moments and yells, millimetres away from your eardrum, when you try to muffle it away. It’s there through happiness, lurking like a mist on the horizon. It speaks through sadness, feeding you reasons to hate yourself.
A year and a half has passed since I was given the news that I had passed a life-changing genetic disorder to both my sons. I had passed them this without realising but did that matter? Not to me. Did my own diagnosis matter? Not at that time, at all. All that I felt was guilt.
A big part of what I still feel is guilt.
I try to live my life with a positive flair. I work best when I’m striving to find answers, a path, a positive way forward and my husband and I have done so well in carving out a new normal for our little family. However if I’m being totally honest, I’m only coping with this as well as I have been because I still can’t let myself think about the future. I have moments, usually late at night, when it hits me unexpectedly. I get an overwhelming wave of nausea, heart palpitations and emotion about what the hell we are going to do when both of our sons and possibly myself will need dialysis and a transplant. Those feelings then inevitably lead straight back to a huge dose of the crippling guilt I’ve been fighting with for the past 18 months.
I did this to them.
I gave them the chromosome that will give them pain and suffering.
The chromosome that means they have to be strong and suffer through tests, procedures and surgeries came from me.
After 18 months I can talk myself down somewhat. I know deep down these are exaggerated emotional feelings but that guilt… that guilt is so real that when you’re in the moment it just feels horrendous. I don’t think it’ll ever go away as Alport Syndrome and it’s effects will always be with us.
Please take a look at Remember The Girls social media accounts below.