Nearly 23 years after the Americans With Disabilities Act went into effect, patients with disabilities continue to receive inadequate medical care — and many cannot even get a doctor’s appointment.
Sunday, May 29, 2011
I think of pain as a speedometer. 1 to 4 is in the yellow, 5 and 6 are green, 7, 8, 9 and 10 are red, and when the pain cranks all the way to 11, you get to see some serious… Stuff…
I’ve worked with people who have a chronic illness, and I even have one myself — migraine headaches. The thing about chronic illness is that you never know when you’re going to have a bad day. If that were the case, it would be much easier to plan around. You could say to yourself: “Oops…looks like Oct. 21 a migraine is going to hit like a sledgehammer. I’ll need to get everything that day rescheduled so I can fall into bed in a dark room for several hours.”
A recent story I did for Gannett/USAToday will hopefully make us all realize that chronic illness is all around us, but not something that has to destroy careers. Here’s the story I did…Anyone who has gone to work while suffering from the flu or a headache knows how miserable it is trying to get anything done.
Usually, it helps to know that your ailment is temporary.
But what happens when you feel lousy nearly every day or you’re in pain most of the time? How do you get a job done in that condition?
That’s a dilemma those with a chronic illness have to deal with all the time.
Rosalind Joffe, an executive coach who specializes in helping people with chronic illnesses, says that whether it’s asthma, allergies, cancer, diabetes, or a injury or ailment that causes pain, chances are good that you or someone in a cubicle near you is dealing with such an issue.
Calling herself “an autoimmune-disease poster child,” Joffe has had a successful career even while managing health challenges such as multiple sclerosis and ulcerative colitis. She started her own coaching business 15 years ago and has counseled others on mapping out a successful career while confronting health issues.
“One of the biggest concerns is that many clients of mine believe their co-workers or bosses must think they’re not up to the work or they’re not doing the work they should be doing,” Joffe says.
In that case, Joffe has her client create a self-assessment to discover whether the person’s performance is dropping off because of the chronic illness or whether something else is at play.
With the demands on workers to increase productivity in a struggling economy, it may be that a work-performance issue is simply a matter of having more to do than ever before.
“I tell my clients: ‘Remember to look around and realize you’re not the only one suffering,’ ” she says.
Employees with chronic illness may decide to inform their colleagues or bosses of their health issues when they believe that their symptoms or doctors’ appointments are getting in the way of regular work duties, Joffe says. It’s a mistake to think that others will figure out on their own what is wrong.
“People you work with won’t think you’re ill. It’s the last thing they’ll think of,” she says. “They might think, ‘Oh, she’s just a bad worker,’ or ‘She’s getting old,’ or ‘She’s looking for another job.’ “
But avoiding a conversation on what is affecting your job performance “really is the elephant in the room,” says Joffe, author of Women, Work and Autoimmune Disease.
If you decide to tell colleagues or your boss about your chronic illness or pain, Joffe suggests you should:
• Let the other person know that you’re living with the pain or illness and that you’ve got it under control.
“Tell them they don’t have to worry about you,” Joffe says. “You want to normalize it.”
• Explain how the pain or illness might affect you and what it might mean for your job.
If you have migraine headaches, set up someone to cover for you when you’re not feeling well. Or help others understand that the problems with your condition may come and go; some days you may feel fine while others will be a struggle.
The unpredictability of a chronic illness is something you — and your colleagues — will learn to deal with, she says.
• Convey through your tone of voice that you’re OK.
“Let them know it’s not a tragedy, and you don’t think of it as a tragedy,” Joffe says.
• Give them permission to ask about your illness — or not.
“People need to know whether you want to talk about it and ask you from time to time how you’re doing, and if you’re capable of doing the work,” Joffe says. “Or, let them know you just want to do your job and would rather not discuss it.”
• Use your emotional intelligence. If you work with a jerk, chances are this person will be a jerk about your illness as well.
Don’t feel obligated to tell everyone if you think some people won’t handle the news well.
I really, really want to help others who are living with chronic illness. I want to give advice and encouragement. I so want to do this!! I feel I have a lot to offer. Here’s a little history of my years with chronic illness for you.
Diagnosed with Ulcerative Colitis/question of Crohn’s 35 years ago. Steroids, 6-mp, asacol, TPN, many hospitalizations. Joint pain, multiple knee/wrist surgeries, migraines, DVT (blood clot) in leg, on blood thinner injections forever. Abdominal adhesion removal x3. Kidney stent chronically indwelling with removal/replacement every 8-12 weeks. Had an ileostomy with a J-pouch 15 yrs ago.
This sounds terrible as I read it back, but I want to give you an accurate description of what I live with and have been through.
The good news is I managed to get through Nursing school and receive my RN. (it took longer though) and I was able to give birth to my 18 y/o daughter (c-section).( I have been unable to continue working the last couple of years)
Shortly after my daughter was born, my UC worsened to the point where I required surgery asap. It was very difficult to be so sick and have a baby, but I DID get through it! I am a stronger person for all I’ve gone through and continue to go through! I would love to help and encourage others with my story, and years of experience in dealing with multiple chronic conditions.
Please feel free to ask me anything at all, I want to help in any way I can!!!
Thanks guys!!! Hope to hear from you!!
Water fountain in a Southern town in the 1950’s
Wheelchair Chronicles #21
Story #1. A Hispanic woman walked up to the doors of a department store one morning. She reached for the door handle but realized that the door was locked. She looked on the inside, figuring that the store was closed but it wasn’t. There were people walking around, shopping freely.
She noticed a letter on the door….
“Hispanic Women Entrance Over There”. Her puzzled look turned angry. She had to walk almost one city block to get to a door that she could enter.
“Hispanic Women Entrance Right Here” she read on the door. She was tired, confused and very angry that she had to walk so far to get inside.
Story #2. After a long day of play, a very thirsty child had finally found a water fountain. She made her way over to it but soon realized that the water fountain was much too tall for her to reach. She looked around for another lower water fountain and spotted one in the corner. When she got over to it she realized that there was a “OUT OF ORDER” sign on it.
She saw a guard standing over to the side and decided to talk to him.
“I can’t reach the water fountain and the one I can reach doesn’t work.” she said.
“Well I can’t help it that you’re too short to reach it. I mean we made that one over there lower so that YOU people can access it.”
“But it’s not working.” She pleaded.
“Well it will be fixed next month. You don’t see anyone else complaining? Why do you feel like you need special rights? I think people like you should learn to bring your own water from home anyway.”
The guard walked away.
Depending on your location in the world, this scenario would probably never happen. If it did, you can bet that it would soon be national news. Hispanic people and parents would be outraged.
But what if people who weren’t parents or Hispanic failed to see the outrage? People of other ethnicities walked through the door of the department just fine. It wasn’t like someone said Hispanic women couldn’t shop there, they were just given an inconvenient door to enter.
Had she parked in the right place the first time, she wouldn’t have had to walk a long distance to get through the door. Some may even feel that since she is Hispanic, she should know that she is going to face some difficulty shopping in stores and that she should just accept it as a part of being Hispanic.
Tall people who reached the water fountain had no complaints either. At least the other water fountain was THERE. It means that someone thought of short people and children. It didn’t matter that the fountain didn’t work as long as it was accessible. Think of all the money the park had to spend for TWO water fountains when one was sufficient. That park had to go out of their way just so that children could drink when thirsty. Where is the fairness?
Replace “Hispanic woman” and “child” with disabled person and you will get the gist of this post.
Far too many people feel that if an attempt to make an area accessible was made, albeit a clumsy one, then no one should have a reason to complain.
Think I’m making it up?
Watch an able bodied person park in a handicapped spot, feeling that they have the right to park there because they are only going to be in the bank for fifteen minutes tops. Or a person blocking a curb cut with their car because…well there just wasn’t anywhere else to park. This forces a person using a walker or wheelchair into the street to hopefully get back to the sidewalk without putting themselves in danger.
Personally, I don’t mind having to use a different door when I go out. I don’t expect every door to be accessible either, although it would be nice. But its not too much to ask that the accessible equipment actually works or that when a space is being designed for public use, it encompasses universal design so that people with all sorts of different situations can have access.
Let’s be fair. Most able bodied people haven’t a clue what disabled people go through on a daily basis. Unless you have or live with someone with a disability, only then you would have that access.
I was the same way. Those handicapped signs are every where and I was at ease with myself knowing that as long as they had that “sign” business going on that they were fine. I might have even been envious a few times after navigating through a huge parking lot looking for a space when all of those wonderful and close handicapped spots were available.
I even made a comment once stating, “Why are there so many handicapped places? Hell if I were handicapped, I wouldn’t even leave my house!” Ugh…cringeworthy I know. I never in a million years thought I would find myself in the same situation. I guess when you know better you do better right?
But even that is insufficient. It didn’t take a bunch of white people to turn black to realize that slavery and Jim Crow was horrible. It shouldn’t take you to be wheelchair bound tomorrow to realize how difficult it is living in a world that wasn’t designed for you in mind.
That blue handicapped sign leaves a lot of able bodied people with a false sense of security. They figure that the issue is taken care of and that nothing more needs to be done. Some feel that any “extra” accommodations given to people with disabilities are unfair and wrong.
This post is a wake up call to the able bodied but don’t act because this could be you or your child tomorrow. I sadly didn’t take the time out to give a damn about people with disabilities and what they went through on a daily basis until it happened to me.
Act because its the right thing to do.