Most of the time, when people ask for help, they really need it.
And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.
What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive. It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.” I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did). My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment. It was very sad, and all I could do was continue repeating myself that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.
Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.
We, who take the brave step of asking for help, sometimes drown in fear of people whose erred assumptions and judgments of us keeps us silenced. And I am shocked that things, like this prolonged interaction, happen so often to people who will not stay and talk about it at such length like I did, who will simply slide back into the shadows because it’s too painful to stay and stand up to a bully.
We don’t [always] look sick, but we shouldn’t have to in order to seek help, and we shouldn’t have to assume the role of mediator when we are attacked by people who don’t know us but who believe with their whole heart that their perspective should be our reality.
Most of us still struggle to get by, to work, and we work hard to keep our diseases invisible because we fear these interactions with people who are ignorant to what we deal with day by day. We struggle to work full-time when we really should be on disability, and our fear of being stigmatized, isolated, and shunned keeps us working our butts off and then collapsing at home, eating microwave meals or to-go dinners that definitely do nothing to help our physical health, and always thinking, “Maybe tomorrow I’ll have the mental and physical ability to take the trash out.” We lose friendships because all we have the energy for is work so that we maintain a roof over our heads. This isn’t life. We have been taught to suck it up because that’s easier than dealing with the shame and embarrassment of asking for help and being “called out” by people who know nothing of our internal struggle and nothing of what our home lives and our mental lives look like or do to us. We are told off by people – they are good people, too – for our laziness, and told we need to “just work like everyone else.”
Work kills us. Do you think that if we could work and still maintain function in the rest of our lives that we would be asking for help? How selfish of you to think we are lazy.
We, whose bodies never rest even when we’re sleeping, are too lazy to just deal with the inflammation in our joints that wracks our bodies with spasms late at night when even the trees are dreaming. We are too lazy to ignore the last five nights of insomnia that we lived with because we fought the temptation to go to the emergency room because there, too, we are judged and shamed for being “drug seekers.” We are too lazy to get off the phone call with our insurance company that we’ve been on hold with for 5 hours, too lazy to quit going to the doctor and just take care of ourselves for crying out loud, too lazy to just put the cane down and walk like a normal person, too lazy to ignore the physical pain and the mental distress (that’s all in our heads, anyway, right?) and get on with our lives, too lazy to just be like everyone else. That’s right, lazy.
It is difficult to be a face of compassion on the receiving end of judgment by a person who is not demonstrating compassion. Someone who doesn’t know us and who may not have any idea what it is like to fight every day to get out of bed, to wash the dishes, to dream of cooking, to push a broom across the floor, wash our clothes, shop for groceries, much less consider wearing our bodies out more by attempting to work on top of it all. Oh, and don’t forget there’s a social life to try to figure out in there somewhere.
I know what it is like to be healthy and work full time and try to balance all the other responsibilities of adult life. It is downright exhausting. I know because I used to do it; I used to be healthy after all. But now I’m sick, through no fault of my own, and I can compare the feeling of being sick and trying to keep up to being healthy and being able to keep up with energy left over. If you’re tired on a Friday afternoon from working a full week you know what tired is for one day. If you live with a chronic disease and work, every day feels like Friday after a long week. Or worse.
So, before you question those who ask for help, especially if your perspective is that all bodies and minds are as capable as yours, consider that we might just be telling the truth and perhaps you could add some capability to your repertoire and try listening. Really listening. Really. Listen. It might be the first time someone who truly needs help has built up enough nerve to ask, shaking in her sick body.
Remember, we mostly want the same things in life. Health, happiness, a reason to live. We are more alike than we are different. Getting to that point takes a different recipe of ability and access and resource for everyone. Help us live beside you as equals by listening to our stories and understanding that in order to have a meaningful existence we may actually need help to get there. Help from those who have something they don’t need and can share. Help us not be bullied when our timid voices cry for help.
If we could all share our stories more openly without fear of judgment, ridicule, and hatred, more people would be more compassionate and more open to the vulnerable.
One who demonstrates hatred against me demonstrates hatred against all those who struggle invisibly, and I will speak for them to my last breath.