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 Journey.

When I was diagnosed with Von Willebrands disease at the age of 12 I never would have guessed the last three years would have turned out the way they did. I always have had bleeding issues for as long as I can remember. I could be walking down the street and bam- nosebleed. Every time I lost a tooth it bled for hours. Cuts, scrapes, etc. all resulted in a ton of blood. So when I was diagnosed it was the 'why' to all my problems. Little did I know that the answer that we had just received opened another door that held many obstacles that I would face in the coming years. I did a DDAVP challenge post diagnosis and the results were very encouraging. I responded very well to DDAVP infusions and Stimate nasal spray. Eventually as time passed after the VWD diagnosis I continued to experience extremely heavy bleeding. I was in my hematologists office every other week and would get DDAVP infusions for three days in a row. This would leave me feeling like I had a horrible case of the fl...

Control

Control. One of the things I like the most but have the least of. I'm the type of person who loves to have everything together all the time. I like to look like I'm fine and like I have everything under control. In my world it wasn't acceptable to ask for help or admit to feeling overwhelmed because I saw it as a sign of weakness. Not for other people, just for myself. I think me wanting constant control went into overdrive after being diagnosed with my bleeding disorder. I believe other bleeders can relate when I say that having absolutely no control of what our bodies do is entirely frustrating. Of course I can control how I react and when I take my meds and which meds I take but I have zero control over when I bleed and the severity of the bleed. So in turn I became desperate to control any aspect of my life that I possibly could. It started with school and then it flowed over into my home life and it started affecting my relationships. I was overbearing at times,...