Life's Changes

The road of life is a bumpy one with changes as we go our different ways. As children we wonder where we will end up - do we want to be a fireman, a cowboy, a doctor, a princess? As we grow, we find our likes and dislikes and start making our choices. After we end our educations, we are ready to start out on our own with new adventures again and again. Later we settle down and start making decisions on where to live and what we want to do with ourselves. Eventually we decide to retire and live out our golden years. Along the way, we make our decisions and decide what we want to do, where we want to work, and who are friends are.

Usually this works, except when cancer or other health issues screw it up.

I read Scorchy's blog post today, Past Tense, on how her health, or lack of it, is making her to make decisions she does not want to do. She had to leave her beloved job, ending her career because she wasn't physically able to continue it.

I thought about it, my health has also forced me to make changes I did not want. I was laid off two weeks before my breast cancer diagnosis. I was so smart, I thought I could go through surgery and chemo will job hunting. I turned down job interviews because I was too sick to go. Eventually I gave up and took a part time, fill in job until I was back on my feet. After treatment I planned on getting a full time job. After treatment ended, I needed gall bladder surgery. Then my back started giving me problems.

I never got that full time job, I stayed working at part time jobs. My health never allowed me to return full time. I did have a career. I had a nice job working in Boston. I left it so I could work closer to home after I got married. So I got a suburbs job and got laid off. Then cancer, blah, blah, blah.

But I don't think I have ever really gotten over ending my career due to my health. I am barely able to work 15 hours each week these days. I battle symptoms from RA, fibromyalgia, and my back on a daily basis. Some days I get out of bed and I have to wait a while until I am able to walk easily.

I think I need to learn to cope with how my career ended too soon. Its not what I wanted. I am not  ready for retirement but I will never be able to work full time again.

Health care reform and employee benefits

Here in the precocious state of Massachusetts which adopted health care reform in 2006, we already have six years of change. Are we better off? On some levels yes. The rate of insured here is around 96% if I can recall the latest statistic with my tiny chemo brain. But the problem of medical debt still exists at comparable rates to before 2006. But the good news in that is that the rates did not increase as I believe they have in the rest of the country.

So while we have progress here, we still need more. It would also be nice for the rest of the country to experience the key benefit we have had for decades - the pre-existing condition clause. That is been on the books here for a couple of decades. I would be interested to see the rates of medical debt nationally after a few years with the pre-existing condition clause in effect.

On the other side of the coin is that employers nationally are asking employees to pick up more and more of the cost of benefits that were once free to employees. On this I am a bit torn. While it is nice that employers provide benefits I do not believe that they are required to offer them all free. Free is a great price but its all part of package deal if you think about it.

Your salary plus benefits is your compensation package and employers are feeling the pinch. They want to keep employees happy and offer benefits and salary increases and then the insurance companies raise their rates by 10% each year, how are they supposed to afford all that?

There is always a hidden price. Somewhere that 'free' is being paid for. And if you want your health insurance to cover EVERYTHING think again. My health insurance does not cover chemotherapy wigs, which I found out to my dismay. But a way of reducing costs for insurance companies is to cut coverage for rarely needed benefits. I would prefer to pay for a wig and not pay $20,000 for each chemo round. Its a carefully balanced system and we can't always get what we want. Sometimes we just get what we need.

Cancer in the workplace

Cancer does not belong in the workplace. Actually health issues do not belong in the workplace. If you are disabled and need modifications to your employment, that is different. If you have a common cold and are sharing your germs with your co-workers, do everyone a favor and go home. But more significant ailments are not required to be in the workplace.

As the patient and employee, you are not required to tell your employer what is wrong with you. It is your choice if you do. But beware the perils of doing so. It doesn't matter how comfortable you are with your employment and your ailment and how much you want to share, it is others' perception of your ailment that is the concern. Cancer is scary to many people. Probably the scariest. There can be a bias as a result. 

I didn't tell any employer or co-worker about my first cancer for 25 years. It was no one's business. Since my second diagnosis, one of my jobs which is a cancer support center, knows about my health issues. My co-workers at my other work know of some of my health issues - even without knowing about cancer I am considered the least healthy person there because I have millions of doctor appointments.

I have worked in many different places and been on both sides of the job offer - extending and accepting. Seriously, if there are two people up for a position, and one has health issues which could be perceived to interfere with their ability to do their job in the future, who is getting the job? Yes we know this discrimination is illegal in the US but we also know it happens in subtle ways. There will probably always be a little subconscious doubt on their part - what if they get sick again???

I read this article which discusses women with breast cancer in the workplace. On one hand I agree - health care practitioners need to improve how they advise women on returning to work or taking time off. On the other hand, why is it anyone's business what has happened with your health. The article states:

"But it is clear that there are considerable differences in women's experiences of returning to work. Some positive working practices were reported, but other organizations were guilty of a culture of ignorance. Many of the negative experiences centered on the unrealistic expectations and inflexibility of some employers, lack of support from colleagues and mistaken assumptions about the woman's physical appearance."


So why were the told what is wrong so they could have these issues? If you get cancer, all your employer needs to know is that you need surgery and some on going treatment. You may need to take time off or a curtailed work schedule for a period of time. For all they know, you could be having knee surgery and need a week off from work and then allowances for PT three times a week. It is not their business.

Since my second diagnosis, I have been a bit more open about my health but if there was another cancer adventure in my life, I think I would selectively share the information.

Who should decide when are you too sick to work?

If you are sick, whether it is the garden variety flu or pregnant or coping with a medical emergency, who should decide when you are too sick to work:

A. The patient
B. The doctor
C. The employer
D. The employer's disability insurance company

Should it be A and then B sometimes? How about when the employer and their disability company start making these decisions? This is a neglected area of health care reform. Companies are cutting back on short term disability insurance - so instead of 70% of your salary, you might only receive 40%. This is understandable during a tough economic times.

But what if the insurance company decides you should go back to work and your doctor says you need to stay home still? And then they cut off your benefits and you are forced to sue? This whole thing appalled me.

I was stuck in a doctor's waiting room with out a book and forced to choose between 'Seventeen Magazine', some men's fashion magazine that I had never heard of, and Smart Money. They covered this topic in some detail in their March issue.

I was pretty darned appalled when I read that insurance companies where having their case managers call people on disability at home to ask how they were feeling, would they switch doctors, etc. I realize that any benefit is subject to abuse and that employers need to cut back on costs, but when the insurance companies start calling people at home to make sure they are still really sick? Oh, please. This has got to go.

If someone is sick and their doctor agrees, why is the employer and insurance company questioning this? If you had surgery that requires recovery time or if you have cancer treatment that is too debilitating to work, that is crazy. I do realize that there are people who go out of work on back injuries and then are caught carrying around 100 lb boxes of stuff. This is a bit different.

This is another part of health care reform that needs to be looked at in detail. The insurance companies should not be telling us when we are healthy and should be back at work.

Jobs and health issues relating to working ability

If you have a medical condition, does it impact your ability to do your job? Well, yes it could. Perhaps you injured your back and can no longer perform a job that requires standing or lifting objects. What if you have a chronic condition (note: cancer is treated as a chronic disease these days)? But your brain still works and can you still contribute to the company. Would you/should you tell your potential employer of your limitations due to your medical history? No, absolutely not unless they need to know. If it in anyway impacts your ability to perform your job that is different than if you have a condition that is under control.

A case in point are the recent stories on Steve Jobs. He had a form of pancreatic cancer a few years back and recently had experienced a significant weight loss. The news headlines rang out - his cancer is back, he's going to die. Apple stock tanked. Then did he have a heart attack? Stock really tanked. The media was ready to bury him before he died. Did he perform his job in the past year? As far as I can tell he did. Also, a company is more than just one person. One person cannot be identified as a company. Someday he is going to die (sorry but true, life is a terminal condition and this will happen to all of us). However, he's not dead yet. He's still working. And the company is still going strong.

This is just one example of the millions out there fear and discrimination in the work place and other relationships. Just because someone at one time had an illness, it doesn't mean they will drop dead on you. Or that they are contagious. Or that the brain doesn't work (okay, I will admit chemo brain can be limiting). But they still are who they are and should be treated as such. Don't turn your back on these people, treat them as you would normally. I know it isn't my place to speak for Steve Jobs or Apple Computer but my point is this isn't such a rare form of bias as you might think. It happens all the time.

Okay, that was my soap box rant for the day. Maybe because I have a cold I am being extra crabby. Or the fact that I am trying to type and the (15 lb) cat insists on helping by sitting on my lap. Yesterday I worked all afternoon. Today, I am going to work from home and see how I feel. I may just stay home (as was recommended by my husband) but I have not decided yet (should I start listening to my husband now?).