Welcome to the reimagining blog post series. These series of blog posts relate to reimagining ideas and concepts into more accessible strategies and plans. Although the topics vary, we examine how we have been reflecting on them personally as well as professionally and some solutions that we've created. This series is an invitation for reconstructing and rebuilding mentalities whether that be personal and collective and for sharing perspectives among each other to gain further insights.
In this blog post, we explore the realm of care plans, themes we've seen within ourselves and patients in expressing care needs and a potential option for creating more accessible care plans through emojis.
In navigating my own disability over the last 10 years and supporting other patients who are also navigating various spectrums of disability, discussing and making care plans is a topic that comes up a lot. Care plans are plans that are made when someone is experiencing a flare-up of their health condition so that their support team has an easy way to know their needs and how to give that to them. They vary from person to person and can be created and recreated as needed as our needs shift over time.
One of the themes of conversation that comes up a lot in discussing care plans is often the challenges that come with expressing our needs. Due to the marginalization that disabled folks experience to vary degrees within society and how we view disability on a macro-level, it is very common for disabled folks to not be as open to sharing the specific needs we have that would otherwise get them the care that they so often need and deserve. As a clinician and someone who also is disabled, I witness and experience this in several ways with the patients I see as well as within myself.
Folks not fully sharing the degree of their pain levels until they've built trust to disclose how they're actually feeling.
This is often times due to experiences of medical gaslighting, shame around how someone may react when they do open up about what they're experiencing, people overlooking how much pain they're in so they start to not listen to their own bodies or a number of other things. It also takes time to build trust with healthcare providers as well as any relationship be that a friendship, classmate, teacher, coworker, etc. to be able to share openly about how you're feeling. With time and finding a supportive environment can start to begin a process where it feels safe to share more honestly.
Folks over apologizing for being "too much" or "too complicated".
Witnessing many patients openly share this with me shows how we as a society treat disabled people simply for asking for their basic needs. When their basic needs are asked for, receiving dismissive responses or overlooking their asks in turn, makes someone think that simply sharing, asking or even existing is problematic and it reinforces the idea that they shouldn't ask in the first place which becomes a challenging cycle to break out of. Know that there is nothing wrong with asking for your needs to be met and the people around you to offer support that is accessible for you when they are able to. You deserve as much care as anyone asking for help and this is a reminder that it is okay to ask and to keep trying and ask for your needs to be supported.
Folks not having or knowing the words to express the complexities that they are feeling and experiencing.
Sometimes we do not have the verbiage to explain our experiences until we've processed things in our own way. This will look different for each person and could look like creating art, dancing, singing, visualizing, resting, napping, eating a nourishing meal, being in nature, etc. Sometimes language is limiting and there may be other ways that are needed to process before we can begin to verbalize it.
Folks feeling too exhausted to talk about what is going on.
Sometimes we may feel overloaded to the point that talking or making decisions can feel too overwhelming. Talking is often looked upon as the go-to thing to do when we're facing challenging times but for many folks, it can be too overwhelming until they have processed it in other ways. My own experience and the experiences of other disabled folks has shown me that talking is a form of high level processing that someone may not be able to do until later. When you're fatigued or exhausted, sometimes the last thing you want to do is talk. Sometimes it may be easier to listen to music or watch a movie with someone than to talk about what is going on.
In sharing the examples I see as a clinician and reflecting on my own experiences in talking about care plans and being in the process of rewriting my own care plan at the moment, one of the ways that I have found effective for enacting a care plan is through using emojis.
Emojis can be a simple way to express to those in your support network of the ways that you need care and can start to make it easier to express your asks to others using words. The image itself can share with the receiver what you are wanting without needing to dedicate more energy into writing out your needs when you may be experiencing a flare and already feel overwhelmed and exhausted. It can be straight forward or it can also be creative in that the emojis that you send to folks can relate to an inside joke that you have experienced with someone so they know the memory as well as know what you are asking for in the moment, fostering multiple threads of connection that can be helpful when we are experiencing a flare.
How this can work well is during the times where you do have energy, to write down the emojis that you would like to use to express the needs you may have when you're in a flare. It is kind of like creating a user friendly map so folks know what your emojis mean and when they receive them, how to respond to you.
For example, using the water glass emoji could mean that when you send it to someone, that they know to bring you a glass of water. Using the movie emoji could mean that when you send it, it means that maybe you do not have the capacity to speak but watching a movie together would bring connection. Using the different food emojis could mean that when you send it, it means that the receiver will order food for you (you can have the list of food items or preferred dishes in the emoji care plan). It can be a creative, fun and simple exercise for yourself to tune in and see what would be your biggest needs during a flare, what things would feel supportive and then share to your support network.
Emoji care plans can create another way to express your needs during the times that you're overwhelmed in a flare. For those who are not disabled, this also can be a way for you to express your needs too when you're feeling exhausted and not sure how to communicate your needs to others so they know what you're wanting without using words. It's a care plan that can be accessible for folks to use as needed whenever you would like to use them. The key in planning is to have a guide that's easy to follow, includes multiple people for different tasks and is easy to utilize when you're feeling low energy so both the person and the support team know exactly how to care for you.
Have you ever used an emoji care plan or have thought about using it? We would love to hear from you on your thoughts of this type of care plan and if you've implemented it, how it has worked for you.
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