There are several myths about disability that I’ve heard from people in my life that truly shows they don’t understand what having a disability means. And to be fair, no one can know what it’s like unless they have experienced it themselves. In some instances, though, family members have walked side by side with a person in their lives who has a disability; in that case, they have enough knowledge to be empathic to that person and others who are walking in their shoes.
Here are the myths I’ve encountered so far, and the facts behind the myths:
Myth #1: “It must be nice to be on vacation.”
Fact #1: Being on disability is not akin to being on vacation in any shape or form. My full-time job is to take care of my health, and that is often more than one person can handle. Having intense pain, muscle spasms, and headaches on a constant basis doesn’t make for a good vacation, even if I can afford to go out of town for a few days. My pain always comes first. How would you like to have chronic pain for the rest of your life? That’s not my idea of a vacation!
Myth #2: “You must be bored, not having anything to do.”
Fact #2: Just because I cannot work doesn’t mean I have nothing to do. I have plenty on my plate with always having to fight for my health care with my employer, their health care provider, the long-term disability company, and my incredible union. When I feel up to it, I volunteer in ways that I know I can follow-through on because I give myself the ability to be flexible. I always listen to my body first, and the group I volunteer for knows that. In addition, I do a lot of writing, spend a lot of time with my dogs, take wellness and spirituality classes, read, and connect with others. I don’t need or want anyone to give me things to do, unless I ask for it. Life is already overwhelming, and I know my limits of what I can take on.
Myth #3: “Talking about your pain is good for you.”
Fact #4: As I wrote in a recent post entitled, “Please Don’t Ask Me How I’m Doing”, I made a request for people to not ask me about my health issues. Focusing on the symptoms and the pain levels I am experiencing only makes it worse. The only people I want to talk to about my dystonia are my doctors, one whom I see every other week and the other whom I see every 3 months. In the last week alone, I’ve spoken with two people who have chronic pain, and they have also declared they do not want people asking about their health either. Even though my life is affected by my disability, I am not defined by it. Let’s talk about another topic.
Myth #4: “Why don’t you just take the bus or get approved for Metro Mobility so you can go where you want to go?”
Fact #4: When you have cervical dystonia, this means your head can’t hold itself up on its own. And with the spasms and pain coursing through my body all the time, I’ve learned I need two things when being transported: a passenger seat that reclines and a driver who can get me to where I’m going as soon as possible. Public transportation and Metro Mobility fail in both of these categories, not only with the seating being so low that I have to use both hands to hold my head up, but the time it takes to travel 15-20 minutes could take up to two hours on these modes of transportation. My body can’t take it. The ride itself is considered a big event for the day, requiring me to rest somewhere relatively comfortable, and that’s just going one way to a destination. Both options increase my pain and spasm levels exponentially, so I’d rather not go anywhere if those are my only choices. Even riding in a car with someone causes pain, but it is the option that causes the least amount of pain.
Myth #5: “You don’t look like you have a disability. Therefore, it must not be that bad.”
Fact #5: Just because something isn’t visible to others doesn’t mean it doesn’t exist. Read the rest of my blog to find out more on this topic, which I’ve written a lot about.
MY HOPES: I hope that the people reading this will listen to the requests I have made so that I don’t keep getting asked the same questions repeatedly. If someone can’t read about my needs and be respectful enough to follow through on what I’ve asked, then I need to add new people to my life who will. In fact, I was so happy to connect with those two people this past week who supported the idea of not wanting to talk about their health. My hope is that you will consider this possibility when speaking with someone who has a chronic or terminal illness. Just ask them! Do they want to talk about their pain or disease, or would they rather talk about other life events? I’m finding myself having to remember this too, since I am friends with a number of people who do have chronic illnesses. I also hope that anyone reading this who has a disability (or someone who is close to a person who does) will take the time to add a myth or two they have experienced. These are just the beginning. I am pretty sure more will arise along my path in life. If I don’t say something about them, though, then no one will ever know. After all, we’re all here to learn together, right?