Living with a Dynamic Disability
On a blue background with white dashed border, a navy side bar on the left with the title “Living with a Dynamic Disability” next to it on the bottom of the image. The words “Dynamic Disability” is in pink to highlight the term.
My disabled identity in the deaf and disabled is the lovely chronic pain I experience on a regular basis. However, each day can be drastically different depending on the level of pain and its impact on me. This is known as a dynamic disability.
A dynamic disability is a disability that can affect a person’s ability differently due to many factors. Most people explain it through the concepts of good days and bad days. On the “good” days, someone with a dynamic disability can appear functional and is able to do many activities from basic tasks to social activities. On “bad” days, extra assistance, aids, and kindness is needed to get through the day.
For me, the pain is there everyday but not in the same intensity. I have a pain management strategy in my life to appear functional for a good chunk of time. I do have flare-ups which are periods of times from a few hours to weeks where I don’t feel good at all and struggle to do basic daily activities. It took many years and work to get to this point of managing it the best that I can but it does not mean that it is not there to remind me of its existence.
How do I live my life with a disability that can be unpredictable at times. Well, let’s explore three areas of life, needs, work/school, and fun.
Needs are essentially what you need to be a human being. This includes food, hygiene, movement, and sleep. If I am in those “good” days, all of my needs will be met without too much struggle. If I am in those “bad” days, I aim to get those basic needs met but it can be a real struggle. My chronic pain is around my head and neck which means balance issues, dizziness, nausea, and fatigue are symptoms that create an environment where making food, eating food, moving, hygiene, and sleep is difficult. So creating systems where on the “bad” days you are set up to at least meet those basic needs are crucial.
Work and school are places we need to be in order to help our future. I am fortunate that I have a job that has the flexibility for those “bad” days but that is not a reality for everyone. For some, it is either reducing hours or getting disability assistance because they are unable to work based on the job options available and the working environments that are not helpful for their disability.
Fun is everything else in life that is usually a choice. Gatherings of family and friends, events, social activities, and hobbies are some examples of fun category. This section is always hard because on one hand I love to participate, on the other hand, part of having a dynamic disability is the unpredictability of the impacts. So, creating plans is hard when you do not know if you can keep them. For me, I have an additional issue where sensory overload is one of my triggers and being deaf with devices is asking for the overload. So, going to activities can be challenging and require thoughtful decisions to make sure I can function after the activity (or be prepared).
What would be helpful for you to know about living with a dynamic disability?
First, I am not lying or faking it. Yes, I can seem really good when my pain is not overwhelming but it does not mean it is not there. I also do my best to not show it even when it is affecting me. It is quite a vulnerable place to be so I will pretend I am fine until I go to my safe space or trusted people around. If you happen to notice it, it is likely much worse than I am letting on.
It is exhausting. Imagine wondering if you are able to get out of bed, every single day. Every action, movement, and decision requires thought and consideration. That is a daily occurrence of making decisions to not make your experience worse than it needs to be. I am not even including the doctor appointments that make you question if it is really all in your head.
The boundaries are for me. Due to the ups and downs, it is very helpful to have communication and boundaries for two main reasons, to manage the flare-up when it happens and to mitigate triggers and possible situations that can create a flare-up. It is not easy to instate them as there is a drive of wanting to do what everyone else can do and the frustration of not being able to do what you want. However, the boundaries can allow more “good” days in the long run and find new ways to still find the joy and fun in life. It just may look different.
Amanda