I was reading Laurie Edward's blog "A Chronic Dose: A Chronic Illness Blog" and found her post "On Work and Chronic Illness". In the post, she links to an article that I then read and excerpted from below.
"Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job." From "Ill in a Day's Work" by Donna Jackson Nakazawa
Wow, did that thought hit home! I work in a job, not a career. I'd love to go back to school to get a teaching certificate and Master's degree in Intercultural Education. The economy is the primary reason I am not moving forward with classes part time, but the ultimate issue holding me back is can I do it? Classes are not the problem; I worry about the teaching internship and student teaching a whole class. Tutoring and small groups are more my style but gotta jump through the hoops first. Then inertia seems to take over when I am not feeling good -- everything seems overwhelming and the daily grind at ye ole desk job is something I can always fall back on (helps that my boss lets me sleep in or work from home sometimes).
Just thinking of leaving this job sets off tons of stress. Yet working full time is painful. I think I mentioned in a previous post that my productivity at work is ~20% these days. I don't think I'd qualify for disability but my quality of life definitely suffers because I don't get enough rest.
I carry our health and dental insurance through work. My love is self-employed and he pays the majority of the big bills. He used to have his own health insurance but it was so expensive and he could get on my work policy for peanuts. It's the least I can do to handle our insurance and try to keep the house from complete disaster (easier said than done!).
Ever get the feeling that life is a trap? This point is where I have to give to God and trust that I will be where I am needed most. Sigh...
Wow. My feelings exactly. I to want to go back to school. I would like to become a counselor. I have a desk job, and though it is not labor work, it is tiring work. I also am having a hard time keeping up with a full work day. But with the economy and the need for my health benefits I stay. Maybe in the future school will be an option. Positive thoughts your way :)
ReplyDeleteYou should move to Canada. Health care is a LOT more affordable.
ReplyDeleteIs there any place in Canada that isn't freezing in the winter?
ReplyDeleteHa ha! I actually thought of moving to Canada when George Bush was elected the second time. I met my future hubby before I could get serious about the move though. Figures I would marry a conservative too!
We have family in the Ottawa area and I can't believe the health benefits they receive. I'm hoping that this new administration gets it right and we come closer to affordable health care.
Just for starters, it is outrageous that pharmaceutical companies can have so much control of our health care bottom line.
I think most places in Canada freeze in the winter. I live in Calgary, and we get a lot of chinooks, so it only gets REALLY cold for a few weeks. I think it's nicer in vancouver in the winter, but they get a LOT more rain, and I've never been here in the winter myself.
ReplyDeleteMy hubby wants to move me to Denmark, and apparently they have really good health care there as well, and they seem to know more about EDS too.
I can't understand how anybody would vote Bush in for a second term. It just doesn't make sense... But up here in Canada we don't seem to be doing any better with our elected representatives. I think we need an entirely new system of government, and law enforcement... And the Alberta medical system is going through some changes that may be for the worse... only time will tell...
I personally think that so much money could be saved in the U.S. if hospital emergency rooms ONLY took EMERGENCIES. But I understand that nobody can be refused care in the emergency department, no matter what their problem is, and that's the only way a lot of people can afford medical treament.
There are so many useless tests performed in hospitals, and in the U.S. it seems like there are a lot of un-necessary surgeries being performed. In Canada, if you have EDS, you are unlikely to get joint surgery unless it's an emergency, like you you broke something, and your bones are sticking through the skin. I've been told that I require surgery on 4 joints, and I would say ater I injured my other knee, it probably requires surgery too... but the success rate of surgery on EDSers is very low, so they just won't do it.
I have EDS hypermobility, chiari malformation, hydro-cephalus, syringomyelia and tethered cord. I look healthy but now that I am 52, I really am feeling the brunt of this stuff. My kids tell me to get a life. Depression is the biggest issue. I guess I want validation that I want a little empathy. I am sick that my family does not want to understand my disabilities. Thanks for letting me whine.
ReplyDeleteHi Linda,
ReplyDeleteYou are not alone. Invisible illnesses like EDS take more than just a physical toll on us. The psychological effects are just as real and difficult.
Check out http://butyoudontlooksick.com/
Next to myself, my family can be my worst critic if I let them. Depression can be debilitating, though, and I know from experience that it can cripple my 'do something about it' mode. Meds don't work for everyone, but they've helped me get a handle on things enough to make better choices for myself. It's not easy.
My grandmother suffered a lot because of family criticism about her "invisible" symptoms. They devalued her feelings and became resentful. Some of that resentment was then passed on to me when I wasn't the super strong person I was expected to be. Now that I have the EDS diagnosis, there is a bit more empathy towards what my grandmother went through, though it is too late for them to apologize.
Also, I've found a lot of resistance from family because they don't want to deal with the possibility that they might have the same physical problems. You can't do anything about that one, unfortunately.
Vent away! That's what we're here for! I hope you've found the various message boards out there too. The EDNF one is particularly helpful, though you have to sign up (membership is sooo worth it!).
Feel free to write anytime. Again, you are not alone!
big gentle hugs,
e
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