First thing’s first, sorry to everyone for my little hiatus from here the past few weeks. With this crazy weather we have been having I have been wiped out by a brutal migraine this past week.. my days have consisted of next to nothing, and all the things on my “to do” list are piling up since I haven’t done much of anything!
This post has been one that’s been saved in my drafts for some time now, but with everything going on the past while it seemed like it was time to share it. From the title I know what you’re probably thinking this post is about (tricked you!) but in fact I wanted to talk a bit about the term “disability” and my experience with this the last few years.
As many of you know, I’ve had some challenges over the years with my health which has not been ideal and pretty tough for me. I don’t particuarly talk about it (or like to)- I am pretty open about things, but over the years I have also found that many think they “know better” than you or will provide their two cents even if you don’t ask for it, so my personal and health matters aren’t my usual conversation starters anyways.
I never really considered myself as someone with a “disability” and I know that there shouldn’t be stigma associated with that word, but I think there still is. And to the point, that I have been afraid to label myself with that word. I am proud of the things that I have been able to accomplish. Turning 26 this year I will have an undergraduate degree under my belt, hopefully a Masters soon, and a career I love and that I feel has a lot of meaning to me. When I look back at my teenage years, there was a lot of things throughout the end of high school and university with my health that made things tough for me. Between procedures, surgery and a lot of specialist appointments, I finally got past the point of us “figuring out” what was going on, and more just on managing my symptoms.
Let me tell you, being like a 75 year old trapped in a 25 year old’s body is pretty frustrating some days. Mostly when I don’t have control over my body (the lack of control over anything is already a challenge for my OCD, but even more so when it is the frustrating and debilitating nature of my chronic health which impedes me from doing the things that I need and want to do. This has been something I’ve had to accept, which as been difficult (and often makes me feel like I’m not like a “normal” person my age despite how much I try to do all the “right things” ).
For a long time because I was worried about being “labeled”, I didn’t want to admit to my struggles with all of this. I have never been one to take handouts. I appreciate hard work and dedication, and even despite all the extra challenges in my life I still had goals I wanted to accomplish, and didn’t let these things stop me. But sometimes doing this, it is easy to forget what I have been able to do. Despite all of this, I’m still where I am today. Because of the the numerous challenges and obstacles I have faced along the way, I have grown and accomplished these things. Despite this lack of control. I do my best every day. But I’m learning to also have grace with myself and trying to listen to my body (and not push myself past my limits which I often have done in the past because I so much want to just be NORMAL like everyone else).
One thing I have learned over time, is that it’s really easy for you to be down on yourself, but takes a lot of conscious effort to celebrate your accomplishments. Being the person I am, I have always enjoyed being busy, having something to do, and reaching milestones and accomplishments. So as I sit here this week, frustrated that my to-do list is piling up, and I’ve had to miss work, it is tough. It’s tough to be made to feel by your co-workers that you are “letting them down” (believe me, there’s nothing fun about it but some people who always look to complain about something have lots to say about you being paid to “sit around at home”). All I can say to that is- you cannot change the behaviours of others, you can just control your own reactions and how you treat others. Kill them with kindness, and the rest will shine through as it needs to.
Unfortunately so many times I have seen and heard people belittle others for the fact that they live with chronic illness and disabilities. They want to make commentaries about how they feel you should spend your time if you deal with a chronic illness or are sick, and if they don’t agree you better believe everyone will know about it. They feel that they should be privy to all of your personal and health information, and are more than happy to share their half informed opinions based on the rumours spread about you that nobody has had the decency to shut down.
I have first hand heard/ experienced coworkers make comments to the effect of “I wish I had a disability so I could get all this time off”- and in this moment it takes everything in me not to stand there and ask them “Would you really? Would you really love to have gone through everything I have since I was 16 and continue to live with on a daily basis?” It is so incredibly discouraging. People can say they understand, but most of the time they truly don’t.
I always find it so funny that in a profession like nursing where people are supposed to be empathetic and caring, we are always so hard on ourselves and one another. I have to remind myself that there are a lot of people who couldn’t achieve some of the things I currently am or have done even without a disability, let alone with one like me! Let people talk about what they want and remember that sometimes insecurities can lead to people expressing their envy in strange ways.
It’s tough to explain what having chronic illness(es) means for your life. That sometimes you have to reorient your life around it totally, spend the majority of your few days off struggling to function, typically not enjoying time with friends, family or doing things like you’d like to. If you haven’t suffered from something like this yourself where it affects almost every day of your day to day life, you just don’t have the same appreciation for it. It’s also tough for me to take a step back right now and think about what my life may look like in 30 years (or even just 10), with all that I struggle with now, and the later life complications about a lot of this stuff. To explain to someone what living with chronic illness is like on a day to day basis- well, you just can’t make them understand. This past year all of these comments and rumours from those individuals who were infatuated with my life, really caused me a great deal of anxiety (to the point that when I returned to work after being off very ill, I was completely overwhelmed by anxiety wondering what people were doing/ saying about me and just increasing the amount of stress I was feeling in an already difficult situation)
It makes me sad when I sit down to think about writing this post, that others have such a hard time celebrating each other. Instead of trampling one another, wouldn’t we be more supportive, and productive if we acknowledged peoples’ accomplishments DESPITE their achievements. To me, that just seems so much more meaningful!
In the past year particularly, I have learned a great deal about who the people in my life are that I value and trust- these have been the people who have supported me in the moments I needed most, been patient with me when I have not been at my best, and reminded me that while this is a part of me, it does not define me. To my tribe out there, you know who you are- THANK you. For loving me and caring about me at the moments I need it most and am the most frustrated by myself and my own body rebelling against me. For supporting me and reminding me that it’s okay to take a moment for myself to be well, and this is a continuous marathon journey- not a sprint. Being a person who doesn’t take a great deal of time for themselves, this has been a great learning opportunity for me to appreciate the value of self care, and ‘refilling my own cup” (future blog post on this!)
For those of you who may have or have had an experience similar to mine struggling with all this, all I can say to you is take the time to be well. Be patient and kind with yourself, your brain and your body- it is okay not to be okay all the time. The best thing you can do for yourself and your future is persevere and not let this thing define who you are. Though I have my moments of frustration, I feel the “everything happens for a reason” motto more than ever- life presents you with situations and challenges you. Who we are as people depends on how we deal with these situations. I want to be known as the person who although may not be perfect, is kind, caring, and perseveres.
And with that, that’s it for now!
Stay safe out there all