In a recent blog about disability being the costume that you wear, I discussed the visibility of a disability. The costume is an analogy which people can visibly see when they look you. The crutches, wheelchairs, braces or walkers easily tell others you have a disability. However, there are many disabilities which others cannot see. How many times have you seen someone park in a handicap parking space and he/she appears to have no visible disability? Many right, I know I have, we need not to be so quick to judge. Yes, plenty of people are hanging a family members tag in the windshield to run in to the market, however many of those people who appear to not have a disability might be suffering from Chronic Pain one of many invisible disabilities.
Anywhere I go, my crutches tell the world that I have a disability. At the same time, I suffer an invisible disability that the world cannot see. They see that I have mobility impairment; the crutches tell them so, what they do not see is my debilitating pain. My chronic pain is my invisible disability and yes, I am using the crutches to help the pain, but that is not what the world sees. They steal a quick look at my legs to try and figure out the reason for the crutches but the reason is not visible.
Wayne Connell, a founder of Invisible Disabilities Association, defines invisible disability as: “Invisble disability refers to a person’s symptoms, such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.” They have coined the phrase “But you look good”. It is a phase millions of people know very well and it can be equally as alienating as wearing the costume.
Why is it alienating? When people are not able see your disability they expect things from you that are difficult or impossible. Human beings for the most part only believe what they can see, so if they cannot see the disability it must not exist. If you use a wheelchair or crutches, it is often easier to receive the help and support that you need. This is because people can see that you have some limitations. People suffering invisible disabilities find themselves constantly struggling with life unsupported. They become thought of as being lazy, unmotivated or unwilling to get better. This is because we cannot see that they have a disability and so we forget or simply do not believe it. Yet, their invisible disability can be equally debilitating as someone who needs a walking assistive.
Chronic pain is caused from a large number of health and mobility problems. The pain is unresolved, has been present more than twelve months and it is rarely permanently resolved. Living with chronic pain is extremely debilitating and exhausting. Pain can engulf your life and make getting out of bed and everyday tasks difficult. The pain that my leg causes daily has been a constant preoccupation for the past five years. It is also something that most onlookers, friends and family members cannot necessarily see or understand. The pain never leaves my mind or body. Throbbing aching pain is what I fall to sleep to each night and mind numbing aching is the very first thing I am aware of upon waking. During the day, the pain can fluctuate anywhere from a nagging ache that slowly eats away at me to where the pain gets so bad that I do not know how I will take another minute. Most evenings the pain pounds in my ankle and vibrates throughout my body until it rattles my brains. Only someone experiencing this pain can possibly know what my daily life is like.
I need the crutches to help relieve the excruciating pain which walking causes and yes every day someone runs ahead to open the door or someone lets me go first. I have become very independent and mobile. This is how I prefer it; but there are days I struggle with every task, not because of the crutches, but the pain that has worn me down. Every task becomes a frustrating chore. It’s those times I need help and support which I don’t always recieve. My independent capabilities in my crutch mobility often backfire as it is not help with walking or opening the door that I need. It is an understanding that I am in pain and living with pain is debilitating, and paralyzing. Another reason people don’t understand this disability is because they haven’t experienced pain, of which modern medical science hasn’t found a solution.
A few years before my ankle injury I was cutting some boards with a power saw. A splinter of wood flew up and lodged in my eye. The pain was excruciating, I went to the ER and they gave me some pain killers to get me through a miserable night. The next day I went to an ophthalmologist. Within minutes, she pulled out the splinter of wood and I experienced instant relief. Two years ago, I woke up with serve pain in my lower back. I honestly thought I was going to die. Once again, I went to the ER got some pain meds and an hour or two later I passed a kidney stone and the pain was gone. Both of these situations were massively painful. The difference is that I was able to get relief and resolve the situation. This is what we are used to and it makes it so unfathomable for someone not living with chronic pain to understand. Even if you break a leg, it is very painful, challenging to deal with it, but it is short term and then it becomes an unpleasant memory. The leg heals, the pain disappears and you move on with normal life.
Pain has become associated as being something for what we get medicines or surgery and it goes away, so how could humans possibly understand someone could live in the pain like many of us do. If we did, why wouldn’t we just go get something for the pain? Every day I hear: “Isn’t there a pain medication? Did you try …? I know someone who tried… now they are cured. Do you really need the crutches? I would find a different doctor? I can’t believe there isn’t something that can be done.” Some told me to drink a glass of vinegar before bed or swim in the Red Sea and the pain would be gone. Everyone has the magic solution, what they don’t have is the ability to understand and I don’t blame them, I doubt I had the ability to understand before experiencing chronic pain.
Living with chronic pain is not easy and it will never be. I believe that until someone has lived with chronic pain it is impossible for him/her to understand what it is like. People who have experienced pain with injury and short-term illness will tell you they understand, but until the pain last for more than a few months, permanently alters their life and becomes unresolvable they lack the ability to apprehend. Constantly telling, asking for assistance or reminding people of pain just alienates us and pegs us as being complainers. Therefore I have learned ways to cope, live my life to the fullest and keep my pain to myself as much as possible.
For those of us tormented by chronic pain daily we are “not looking for sympathy but just some understanding.” The understanding that living with chronic pain is difficult, exhausting and we are doing our best. But sometimes we need help, a shoulder to cry on and most importantly acknowledgment that we are suffering. Just because someone doesn’t exhibit visual symptoms of a disability doesn’t mean they are not struggling to accomplish simple daily tasks.
A quote from Stephen Hawking sums up very nicely about how I now live my life. “It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly. People won’t have time for you if you are always angry or complaining.”