They say trust is given not earned and yet, it’s hardly to the point of being earned anyway.
Trust. One of the strongest, even most crucial pieces in a relationship, regardless of how intimate. Yet for disabled people, it’s something many of us rely on every day. For those with caregivers or those who need help from others in their daily lives, it’s necessary for survival. Along with my own personal experiences, other disabled people have shared their own stories regarding distrust, usually with doctors in particular. And I want to talk about it.
To start off, the idea for this topic stemmed from an old memory back when I was a kid. I used to do water therapy back then and I vaguely remember one of the exercises a physical therapist wanted me to do. It required floating on my back and pressing my feet flat against the tile wall then she’d push me closer to stretch my ankles.
Well, that was one of the few instances I refused. She didn’t force me thankfully, but she said either I did the exercise, or we get out of the pool. As a kid, I didn’t want to leave, I loved being in the pool and forgetting that gravity existed as a constant weight. But I also didn’t trust her enough to not accidentally hurt me as others have done before. The problem was I didn’t know how to say that out loud. It felt wrong and disrespectful yet that’s how I felt.
I insisted I wouldn’t do it so she pulled me out of the pool which was also terrifying because I was afraid of her hurting or dropping me since it’s my parents that would normally move me. But still, I stayed silent, worried that I would get in trouble for not following the rules. I didn’t though I don’t remember much in general.
While this is just one instance, it always stuck with me because it’s a vivid memory where I truly felt helpless in not being able to explain myself. Not just because I didn’t know how to voice it properly but also because a part of me knew they would reassure me that they wouldn’t injure me, and I just didn’t believe it.
Too many times have doctors or other people promised they’d be careful with me, only for them to twist or pull something too hard and result in painful tears. I’m apprehensive of people touching or moving me, which is unfortunate considering that’s what I have to do every day due to being disabled.
And to bring another point about doctors as well as other people in the medical field, it’s sometimes especially difficult to bring up our concerns when regarding our health. This is because we’re not believed nor taken seriously, or they assume it’s a simple diagnosis that we can somehow correct on our own. I’m talking the usual “just lose weight,” “take some Tylenol,” or “it’s period/hormonal related.”
Even though I’ve been lucky enough to not been told these things, there was an instance where one doctor or resident kept insisting that pain is only supposed to travel downwards. I’ve been having chronic nerve pain in my legs and when it first started the pain would begin at my foot then work its way up to the back of my knee and finally back of the thigh. And while I believed what they said, I was still feeling the opposite. It could be a matter of the pain would actually be going down, but it would start at my foot which would then cause the rest of my body to tense up and agitate the other parts accordingly. Who knows? I’m not a specialist by any means.
Regardless, it made me feel uncomfortable because I couldn’t understand it. Maybe my brain wasn’t reporting it correctly or what if I was experiencing it the wrong way? It wasn’t until I saw a specialist for a specific test that said, “well if it feels like the pain is going up for you, then that must be the way it’s going,” after I told them about the other interaction. And it was said so matter-of-factly, but it helped further reinforce my experience. It almost felt silly to doubt myself because who else can truly explain my feelings except for me?
While this may seem like a minor encounter and easily resolved, for many other disabled people, things don’t always go that well which is so disappointing and extremely frustrating. All those other quotes I mentioned above are the typical responses we’ve been told which sounds ridiculous when you consider how complex most of our conditions can be. Things can’t just be fixed with some pain meds, exercise, and rest or whatever they recommend for periods/hormones, which is probably just wait it out. As if it were that easy in the first place.
So, how do we get our point across or solve some of this?
- Communication
Listen to us! Let us speak and hear what we have to say. Don’t just assume you’ve got it all figured out.
For those trying to explain their situation, speak up. It’s still not always easy for me because of initial doubts, but I remind myself I’m doing it for me. You have to keep your own best interests, safety, well-being and happiness as top priority, especially when it comes to your body. Doesn’t matter if it’s mental, physical, or emotional, all of it is important.
- Trial & Error
While not the most enjoyable and definitely most tedious/draining, this means keep going until you find someone who will listen and respect your voice. If you’re able to keep searching for the right people and can avoid whatever person that just slightly meets the bare minimum, then do it. I know specifically in America, the healthcare system is screwed, and we’re only given so many limited options, but again you’re doing this for your overall well-being.
- Stubbornness, Confidence & Persistence
Tying into the first one, don’t back down. Not everyone is comfortable with confrontation, myself included, but we’re the only ones that can advocate for ourselves and insist that we get the care we deserve. When it comes to my chronic pain, I still keep my specialists updated and ask what’re my options. For other situations, I tell people what I’m comfortable with and explain what I need if I’m not. Knowing your needs and what your body’s needs are help as you can further understand each aspect by identifying what’s wrong, where it is, when it needs resolving, why it’s important, who’s involved, how so, etc. so it’s easier when voicing those things since you’ll have a clear idea already.
And when in doubt, reach out to others for help navigating through all this because even if they haven’t personally experienced the things you have, they can probably point you in the right direction or offer some advice and support.
Have your own personal experiences you’d like to share? Comment down below!
Trust is something that takes time, and it constantly takes work, so even when it becomes frustrating or exhausting, try at least trusting yourself. Be your own support. ~So Says The Disabled Dryad~
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