Even at my MOST FIT, I was still disabled. I just didn't know it, and instead I constantly overdid it, causing myself MORE pain, and dismissing my own valid disability issues. Instead of seeking help for the pain I was experiencing, I told myself I just needed to be tougher.
I would look at other people who could run daily, or do tough, hour long workouts daily. I never could do that. No matter how 'fit' I was, I would still experience pain and fatigue. Basically, my body would force me into recovery days, and I would feel awful.
And, of course, in the times I DID try bringing it up, doctors would tell me nothing was wrong. When I was pregnant with O, I started having these issues with my left middle toe. I STILL HAVE THEM! Almost 9 years later!
Now, I realize it's likely related to the probable hEDS diagnosis I'm seeking, because my joints got EXTRA loose while I was pregnant. There were days I almost hit the floor when I got out of bed, because it was as if my hips didn't exist anymore.
It's still a journey and a fight for me. I am getting a little closer, but it still feels exhausting. I have been having joint pain and instability since I was a CHILD, and so many people dismissed me, I learned to dismiss and chastise my own self.
I don't have joint pain and other pain because I'm now overweight. I was born with this body, and lack of proper medical support is the reason I have increased pain and lack of mobility. I had joint issues when I was skinny and 'fit'! I still have them.
Disability does not HAVE a certain look to it. I'm tired of a world that dismisses valid pain and challenges. If someone had listened to me earlier, I would be struggling as much as I am now. This is why I will ALWAYS listen to my children about how they feel.
But, accepting and embracing being disabled has helped me start putting aside the guilt I used to feel when my body would struggle. I still have internalized ableism to unpack, like all of us, but saying 'I am disabled' gave me FREEDOM in so many ways.

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More from @awesomebrandi

4 Oct
Z and I were both tired and on edge tonight. There was some definite tension going on, that was building as Z got ready to go to bed. Then, I decided to change my attitude, and I put my energy into being silly instead of angry.
I became over the top silly, and she couldn’t help but start laughing and being silly in return. We ended up ending the night in a positive manner that lifted both of our spirits. You would be surprised at the relief YOU get as a parent, when you put anger away.
Now, I promise you this: I do not always make the right choice. I don’t always win against my own challenges, and I make mistakes in how I handle things. But, this is an important reminder…
Read 6 tweets
19 Sep
So, what IF someone who self-diagnosed as Autistic was wrong? What exactly is going to happen? It's not like 'officially' diagnosed Autistic people are being showered with endless support and acceptance, so what exactly is a self-diagnosed person harming? NOTHING.
People who realize they are Autistic do it because they've been searching for something. They've been trying to understand themselves, why they see the world the way they do and looking for community. Why is that a bad thing? Why is someone feeling at home in their skin, bad?
It's NOT bad, but what people don't like is that self-diagnosis puts the power in the hands of the people, instead of the elite few. People don't WANT disabled people to have their own power. People want to continue to control and deny disabled people.
Read 9 tweets
17 Sep
I was misdiagnosed as bipolar as a teenager, heavily medicated, forced into hospitals and harmful 'professionals' which left me with serious trauma and never actually helped me feel better with any of my challenges.
It wasn't until realizing I was Autistic and ADHD, and then being on ADHD medication, that really changed my life. I have been on SO MANY medications for 'mental illness' and nothing has worked like ADHD medication has.
Doctors, professionals, etc are NOT immune to bias. The DSM has been modified many times, and still needs further modification. There is a big difference in what people understand about the brain vs the body. Science is ALWAYS a work in progress.
Read 16 tweets
17 Sep
So, O was not happy with me last night after an encounter right before I was going to put him to bed. So, he went to my spouse and wanted HIM to put him to bed. He was trying to pull him up the stairs to do bedtime instead of me.
I am sorry he was annoyed with me for the necessary thing that happened, and we have already had our moment, but I loved seeing him express himself and his wants, and we switched kids for bedtime. Like, even if he was mad at me at the time, he's allowed, and he expressed it.
Sometimes my kids are going to get mad at me. They aren't always going to agree with me. That's allowed. They are human and they're allowed to disagree with their parents. They're allowed to disagree with other adults, too.
Read 4 tweets
16 Sep
If you aren't a nonspeaking Autistic, you simply cannot understand what it is like to be one. I am Autistic & I will never FULLY understand what it's like to have such a strong body/mind mismatch like what my son has. We have a lot of commonalities, but we aren't the SAME.
It has been a journey to try and understand. Like, I always knew he was this amazing fire inside, and he's certainly proven it, but it doesn't mean I know what it's like for him to live with his body and brain every single day.
And, I'm not trying to vilify it, but I know he's expressed he just doesn't know why his body reacts in certain ways at times. I know he gets frustrated when he cannot express himself the way he wants to at times. That's why I am really trying to give him as much as I can.
Read 10 tweets
14 Sep
I live in this really weird in between spot that not a lot of people live in. I grew up in extreme poverty, and now I am middle class. I live in a 'nice' neighborhood in a 'nice' house, that we happened to get a killer deal on at the time.
I normally feel like I don't belong here. I am still the poor girl that I grew up as, inside. Yet, I spend time with people who have money, and even if they had less growing up, not many people can relate to what I went through and how that trauma affected me.
It's hard for me to feel comfortable with people who've never experienced oppression of some sort. That's why pretty much all my friends are traumatized, disabled or both. Plus, a lot of immigrants and BIPOC. Those people are the people I feel safe with.
Read 10 tweets

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