The young and disabled (title for a new reality show?)
I’m out at the coffee shop and I run into someone I haven’t seen in awhile (this happens often now that I am back in my hometown). Then it happens, the inevitable question is asked…”So what are you up to these days? Where are you working now?” My palms get sweaty, my heart starts to race and I think to myself “How do I say the phrase ‘I’m on disability now.’ without worrying about the impending face people make once you say THAT word?” I decide to go with a different route and say “I’m not working at the moment, just letting my body heal.” That sounds good, right? Then the face happens…the downturn of the lips, the uptick of the eyebrows and the classic comforting arm pat. They say the standard comment of “Oh geez” or “wow” or even “Yikes.” Next comes me launching into an explanation of what is going on in my life. You can almost hear my urgency to convince them that I am worthy of receiving disability and not working. Then in the next moment I am trying to figure out how to make my life seem relevant still without my career to back it up.It took a few times to realize that the outcome of these exchanges not only happened because of people’s perception of a young person (yes I still consider myself young) on disability but my own prejudices about the topic. Why am I scared to say the word disabled? Why am I minimizing the experience I’m going through by saying “I’m just letting my body heal” or “I’m not working at the moment”? I think its because I have had my own idea of what having a disability means through how the media and the community portray it. So I decided that I wanted to write about some of the stigmas that I think make being on disability hard or even a shameful thing for young adults like myself with a heart condition.
Just living on a government handout
You are on to me now…the first day I started working at the ripe age of 14, I’ve been plotting the best way to stop working. I now sit on top of my money pile, laugh and think “I finally got away with it!” I think for me one of the scariest things to do was to stop working and leave the security of my paycheck and health insurance. I worked close to 20 years and payed into a system that I believe should be there for the people who need it. I think its also important for people to understand that the government or insurance companies don’t just “handout” benefits to anyone. The amount of paperwork, questioning, documents, medical tests that you have to provide are intense! I also think its important for the community to see young adults with chronic illnesses as more than just the disability their body has. We are intelligent, we have careers, we can think for ourselves. Just because our bodies don’t work the way we want them to, does not mean we want to give up our right to provide for ourselves. For those of us that have to make this decision, we aren’t looking for a handout…we are looking for a way to prolong life and get healthy. The stigma that people on disability just don’t want to work is ridiculous and young people with CHD like me should not have to worry about this kind of thinking. A reminder to those in this judgmental state of mind, we didn’t choose this…we were born with this defect, we are surviving this defect and we deserve to be supported when our bodies choose to go against us.
You must have all this extra time on your hands or you must enjoy relaxing all the time
I am guilty of thinking this exact thing. Without working, I should have all this time on my hands. What I didn’t factor in was that I would be exchanging my career in social work for a career in getting healthy. Folks..I’m here to tell you..its a full time job! Getting healthy, living with CHD and recovering from years of surgeries is rough and demands all of my energy. I won’t lie, I have been able to cut my stress down quite a bit by moving home and not working. It is a true blessing and because of that I am getting better every day. But lets get real, I know some people think my life has now become this endless vacation full of relaxing moments in the sun. A person like myself who is struggling with CHD looses energy, oxygen and stamina quickly. To give you an idea, at a steady pace on flat ground I can walk .37 to .7 comfortably (this is after about 4 months of training). However, I wheeze, my heart flutters, I then get anxiety over the flutters and usually after I walk I have to nap/rest for awhile. Here is a great experiment for you all to try, next time you go for a walk and you get to the place where your heart rate is elevated and your body is demanding more oxygen, place your hand over your mouth creating a loose suction. As you breathe in through your mouth, you will notice the difference of how much harder it is to suck the air in. This is what it is like for someone that is using a smaller percentage of their lungs, like myself. Another way to look at the whole situation is to think back on the last time you stayed home because you were sick…did you really feel relaxed? Or did you feel exhausted? There are days that CHD can feel like that. Breathing is a workout, even resting can be a workout.
You don’t look disabled or sick enough
I’ve seen all these facebook posts or heard comments by people about what they think disability looks like for a young person. Is there some disability chic look I don’t know about? I’ve seen this real judgement towards people who are disabled…like they MUST look a certain way in order for people to justify them receiving benefits. I’m here to tell you folks…CHD, like a lot of other diseases or disabilities, isn’t always visible on the outside. I have been battling this heart defect since birth…I have some wicked scars (we in the CHD community are quite proud of our battle zippers), I have put on a bit of weight, I walk slower than normal, I look tired (who doesn’t though on most days)..but that may be the only external signs I exhibit. I feel like the CHD community gets overlooked because of this fact. In reality our battle is internal but still relevant.
I think its time that our community starts to see Congenital Heart Defects as a new way of redefining what disability can look like for a young person. 1 in every 100 children are born with some form of CHD. Congenital heart defects are the #1 cause of birth defect related deaths and the leading cause of all infant deaths in the United States. There are an estimated 2,000,000 CHD survivors living in the United States and those living with a critical form of CHD might have to make the same decision that I did. We are starting to see more adult survivors like myself then ever before due to the technological advances science has made. Which makes me think its imperative we started supporting CHD survivors and fighters who must take this epic step in their lives.
In the past I saw going on disability as an ending, like it was going to take something away from me. Disability would be the end of my career, my purpose, my happy ending I so often pray for. If anything it has become a beginning for me. It has become a chance to live a purposeful and healthy life.
So from now on I will try to be proud of the fact that I am young and disabled…because that means I chose to fight for life and in the end, isn’t that what makes the view from the recovery trail even sweeter?