I went a long time without writing because I’ve been managing my health, growing my business and taking care of my family. But honestly, my health is partly why I haven’t had all that much to say.
The reality is that when you live with pain and discomfort every day, you start to feel like talking about it is something others will find boring.
“What did you do today Allie?”
“Well, I tried to put my joints back where they are supposed to be, looked at some adaptive devices to see if they can make my life better, cried about being a 35 year old woman googling shower chairs.”
This is just life. It just is. But it’s lonely AF. I am thankful for the community I’ve found online of people who struggle with the same things that I do who have more helpful advice about the practical business of living with a chronic health condition. I’m grateful for the ideas and solutions they’ve presented to help me find my way.
That said, I’m deeply aware that the lack of representation of people with disability in mainstream media has severely limited the mental map we have about what disability looks like.
I am aware of how not having those points of reference impacted how I felt when I realized that there was something wrong with my body that meant my life would need innovation to live comfortably. How isolating that felt. I didn’t have an example in my head of how that could still be fulfilling, that I could still have the same things, that I could still be happy. I didn’t know what that could look like.
Would my boyfriend still be attracted to me because this is more than he signed up for and is he going to worry about his touch hurting me when I have trouble washing my hands without my fingers popping out of place?
What will my business look like? Will clients want to work with me?
Will my son be disappointed I can’t do all the things other moms do?
Now that this is something that is my reality, I have sought out successful women running kickass businesses, having fulfilling relationships and raising awesome kids and it’s less lonely. I know it’s achievable. But I can’t help but feel that if we expanded the lens of youth, disability, love and life, dealing with the reality of life changing with a diagnosis could be a little less uncomfortable and scary.