So I just went for testing for the hypermobility syndrome. I’ve told very few people and have gotten various responses: “wow” “you don’t have that – my cousins uncles fathers sisters brother has that and you can’t have that. I know what it looks like” “you can’t have that you’re not skinny enough” and i’ve only known about this several days. Sigh. I’m so done with the stigma of chronic illnesses. I’m so done with the stigma of everything. This is why I stopped telling people about this.
I probably shouldn’t be writing this – cause I’m in pain and overstimulated and extremely tired but here we go.
Let’s talk about the stigma for a bit. All chronic illness sufferers do not look the same. Let’s just talk about the Ehlers Danlos syndrome – there are 13 subtypes alone. So I’m definitely not gonna be like anyone else.
Also? Just because I suffer from something does not mean I’m gonna complain about every symptom to every person I meet. I do not actually cause – i am convinced no one cares.
Honestly I don’t even tell my husband all the time – mostly cause I don’t want him to freak out.
I am weak most of the time.
I am in pain a lot but randomly.
I feel random pains constantly.
Like today? My hamstrings – well at least the area (on both legs) are killing me. Nope. Dont know what happened. Just woke up like this yesterday.
I told y’all about my thumb randomly being stupid.
I cant even think but I know there is more crap.
Why write this? To remind y’all – while we are sick and tired of being sick and tired? We want you to know – we are human too. Some people may need validation, some people may need someone to just say: “wow that sucks” while others like me? Just need you to understand – we are trying.
How can you help someone who suffers from chronic illness and/or pain?
Pray for us. Don’t judge, don’t diagnose, don’t treat – just pray.
God can do anything, we know that the doctors can say words like: “Incurable” but my God is bigger and stronger. And if He doesnt heal me of this? If I dont get answers or whatever? Know this my friends:
My God is still good.
He allowed me to go through this for a reason – and obviously I share what I am learning with yall – so you’ll know when I know. This freaking sucks and I cant wait for answers. But I know….I KNOW God is good.