Skip to main content

Ignorance is Bliss

There are two types of people in the world. The kind that care and try to understand the situation and those that don't. One isn't necessarily better than the other- that's just how it is. Some people are predictable. They are who they are and you know to expect that from them. There are however the instances where words fly out from left field and slap you in the face. The hardest part is when it's coming from someone who should love you unconditionally and support you no matter what.

I've had my fair share of individuals close to me not understand and fail to take the time to try. I believe a major part of understanding the life of a bleeder is asking questions. I find it difficult to want to explain my day to day life to people who don't seem to care. In my eyes, it's a waste of  time.  It's hard to affectively educate as an unaffected person tells you how you're supposed to live your life. Let's all keep in mind what they say about assuming. I guess the best way to explain it is like this... it's different to explain things to a stranger and them not understand than to explain it to someone close to you and them completely ignore it.

I guess a lot of it falls back on me though. The miscommunication and misunderstandings should push me to want to advocate that much more. In all honesty, I just don't think I'm there yet. I've blown off a lot of people that I was once close to because of this. I'm tired of surrounding myself with the negativity of people who refuse to ask questions and acknowledge what I tell them. Maybe I'm wrong in this, but right now I just don't have the patience. I'm ready to surround myself with people who support me and are there for me when I need it the most.

When you live life with a chronic disorder the support and kind words of others goes further in getting you through the day than many people realize. I've been blessed to meet people in the community who can sympathize and understand on a different level. Their support and empathy mean everything. As disappointing as it is to not have the encouragement and support from some key individuals I used to feel close to, my hemo family makes up for it. It truly is the kindness and love from these people who keep me going on my worst days, and without them, I don't know where I'd be.

Comments

Popular posts from this blog

A Bittersweet Reminder

   My most recent trip to the hematologist and my latest round of bleeding has left me feeling like I'm fighting a never ending battle. I've been consistently bleeding for about 4 weeks now with more pain than I have ever experienced. My meeting with my hematology team was less than encouraging. My lab work came back ok so they've decided to take me off Stimate due to a risk of clotting. I understand and appreciate where they're coming from but in the meantime what now? I haven't been seeing very good results from the Stimate anyways so I guess that in hind site it doesn't really matter... but it does. I feel like I'm insane. Well, if my labs are good does that mean I don't really have a bleeding disorder? What if this is all in my head? Am I just being a baby about it all? No. This is real, every part of it. Alright, my labs look good...awesome... but what are you doing to help relieve me of my symptoms? "You should set up an appointment with your ...

My Body is Not My Own

It's not a secret that one of the less glamorous symptoms of bleeding disorders in women is menorrhagia. *Menorrhagia is described as heavy periods, lasting upwards of 7 days with the presence of large clots for more than one day of your period. For women, it's often taboo to talk about our cycles and what our bodies go through every month. But having a bleeding disorder complicates the secrecy that so many women strive for. For me, my periods have always been the most challenging aspect of my bleeding disorder. Like most females with BD's, I've been placed on vigorous courses of hormones to attempt to place a band aid on my body's 'normal' physiology. My last round of oral contraceptives was a low dose estrogen tablet that was used as a last ditch effort before deciding to place a Mirena IUD. I was 14, so in addition to my already (naturally) imbalanced hormones, my body was shocked by this new influx of estrogen. I immediately recognized that what was...

My life. My disorder.

I’m struggling these days in having to explain my disorder to other people, specifically non-bleeders. There is this blatant disconnect, it seems, in my world and theirs. Some people understand, or try to the best of their ability, but more times than not I feel like I’m being second-guessed or judged. I feel like there is a line. Maybe I have subconsciously put it there or maybe it’s just there. Either way, I feel like when I’m with other people I’m on the other side of the line. Non-bleeders just don’t understand how something so tiny to them- a drop of blood and a band aide- can be life ending for me. Bleeders learn how to prevent these situations from being life ending and how we can be pro-active opposed to reactive but at the end of the day it’s just not the same. Another aspect that I find really hard to reiterate is the fact that I am NOT choosing to bleed. I am not suddenly bleeding because I choose to be. I am not covered in bruises by choice.   I feel frustrated...