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Endometriosis Awareness Month: Financial Fallout

Previously this Endometriosis Awareness Month, you heard from Diane and Endochick in Voices On Endometriosis about ways in which endometriosis has impacted them. I had also asked my friend Jenn if she’d be willing to guest blog this month. Today, I am honored to share what she has written about the financial implications endometriosis has had for her.


Jenn is chronically healing from Stage IV endometriosis. She has a Master’s Degree in Liberal Studies with focuses in Conflict Management, Human Development & Family Studies and Sociology. She is a Certified Coach. She started her endo blog last year to chronicle her journey and struggles with endometriosis. She is always searching for alternative, complementary treatments and self-care options for women.



I was diagnosed with endometriosis six years ago after years of pain and misery. My life has changed in many ways because of my disease. Lately, the financial consequences of my endo weigh heavily on my mind. The largest financial toll has been over the last year.

I was incapacitated by my endometriosis symptoms in January 2010. My endo pain flared & raged and didn’t relent for months. I was unable to work. When my FMLA time ran out, I was given two medical leave extensions from my employer. I was healing from major surgery when my second extension expired and I was fired from my job. My employer said I “voluntarily abandoned” my position in a shady attempt to prevent my unemployment benefits.

I would have been able to return to work the week after I lost my job. I fought through two appeals with my former employer to receive unemployment.

The majority of our financial burden fell on my husband. Without him, I would not make it financially. My monthly unemployment amount isn’t enough to even pay my mortgage, not to mention my other bills. I am not complaining; I am grateful for the unemployment benefits. Still, the truth is, it’s tough to survive on the amount I receive. When my weekly benefit amount was determined, three months of my FMLA time were factored into the equation. In other words, three big fat zeroes were included in the average. Those zeroes did not help my cause.

I have been well enough to work for months but I haven’t had any luck finding a job. As the blank space widens between the present and my last job, I know my chances of finding work grow slimmer. How do I explain my joblessness to potential employers? It’s quite a dilemma. There’s no good response. The truth won’t help me secure a job. It’s hard to imagine an employer excited to hire a person who was too sick to work for six months. Besides, my medical condition and history should be private. The only other option is to be untruthful, but there isn’t a lie I can conjure to adequately explain my situation. Employers don’t like gaps in employment, period.



Now, add in all of the medical bills I acquired over the six month period — two surgeries, three ER visits, several doctors’ appointments, and expensive medication. Trust me, the math is depressing. When I was fired, I had just met my insurance out-of-pocket maximum for the year. I had to start all over with my new insurance. (My difficulty finding insurance coverage is a whole other story). The only insurance I was able to obtain comes with a hefty $5,000 deductible and they don’t pay a penny until I hit that amount. Ouch. Since I have no clue how my endo will progress from this point, I have no idea what medical needs may arise. Any medical care will be expensive. I guess I was lucky to even find an individual insurance plan though; my husband was denied coverage by every local insurance company due to a pre-existing condition.

My list of financial worries goes on and on and on. I don’t know if I’ll ever get back on track and it’s terrifying.

Most days, I don’t let money concerns consume me. I remind myself of all of my blessings. I try to keep it all in perspective and remember it is just money. However, I do have days when the weight of my financial worries collapse upon me and make it difficult to breathe. I need to have faith and believe I will make it through this tough time. When I get stressed about money, I have to remind myself that my financial troubles pale in comparison to the physical and emotional pain my endo symptoms have caused me.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis Awareness Month: Financial Fallout

11 comments

1 Hayley CafarellaNo Gravatar { 03.22.11 at 6:38 pm }

Thanks for bringing attention to the financial implications of enduring a chronic illness, Jenn, I think it’s a topic that often gets left off discussions! Doctors appointments are expensive, as is any kind of ongoing physical or psychiatrical therapy. It’s hard for people to pay their rent, let alone be able to get the best treatment available!

2 EndochickNo Gravatar { 03.22.11 at 8:38 pm }

Jenn, the financial consequences of this disease can be devastating at times. The fact that you want to work, are willing and able to do so, yet cannot find a job is not an isolated story in this current financial climate. But the fact that you’re concerned about how your health will affect possible job prospects, is one only a chronically ill person can identify with. And it is sad fact. As I near the completion of my Masters degree and begin looking for job specific employment, I wonder how I will disclose, if I do, the number of hours I’ve had to miss for appointments or sickness. I know by doing so, this will outweigh the number of hours I have suffered through pain to finish my shift, or come to work despite the intense pain. Or ignored doctor’s warnings and went and worked through the pain. These things don’t matter the moment you have to explain missed hours.

3 JennNo Gravatar { 03.22.11 at 9:59 pm }

Jeanne~ Thank you so much for the opportunity to share this post on your blog! I am so honored and touched. You and your blog mean so much to me. Having you in my corner has helped me more than you could know. :)

Hayley~ Thanks for reading and commenting! I also think it is an overlooked topic. It is one of the many unfortunate consequences of chronic illness. It saddens me to think of how many people can relate. It can be very overwhelming.

Endochick~ Thank you for reading and commenting too! So true, it is a sad fact. It’s a tough situation to be in and I don’t know a good solution. Too many people are discriminated against for medical reasons and it happens in a way that makes it difficult or impossible to prove. It’s unfair. I’m sorry you know how it feels.

4 DianeNo Gravatar { 03.23.11 at 9:57 am }

On my 22nd birthday, I was fired from my job as a data entry clerk because I was 10 minutes late. I was running late because that morning, I fell down in the shower and passed out from endometriosis pain. My boss told me that while I did excellent work, she needed someone who would bother showing up on time. The day didn’t get any better: my husband (now my ex-husband) did not even bother to get me a birthday card, a present, or even a nice dinner. It took me months to find another job, and even then, it was only part-time work at first. Let’s just say it was a low point in my life.

Now, 15 years later and well into establishing a meaningful career, there are days I just can’t do it. Most days, however, I do force myself push through the pain and get to work because I have so much at stake financially and professionally. That said, I am lucky enough to be in a profession where I usually do not have to show up exactly on time, and I can work at home frequently. (Otherwise, I might not make it!)

I wish you the best of luck in finding a new job.

5 Jannie FunsterNo Gravatar { 03.23.11 at 6:26 pm }

Dear Jenn, you are so brave to write this and share your heart and concerns.

It is my sincere hope that you will find the right person to hire you for you and your skills. And I feel the right person and job WILL crop up. You have so much education and so much to offer, I’m sure it will be sooner than later.

When I had treatment and surgeries for my endo we were covered 80%. Now we are without insurance and have been for a while and it’s a bit scary if I stop to think of it. So I try not to.

Luckily you sound like a very upbeat and positive person. I think things will end up working out very nicely for you. Keep looking!

And a gap may not be such a big thing these days, many people have employment gaps in this economy. Keep the faith!!

And thanks to Jeanne for having you over here!!

xoxo

6 JeanneNo Gravatar { 03.24.11 at 11:43 pm }

Hayley:

I totally agree that this very important topic tends to get left off discussions. I was so pleased when Jenn came up with the idea to talk about this topic that stares many of us in the face but somehow doesn’t tend to be a common topic on blogs. ;) Like you said, paying for housing can be difficult let alone paying for medical treatment on top of it.

Endochick:

The financial consequences really can be devastating. :( It is unfortunate that having to explain missed hours can overshadow a person’s great talent, skill, work ethic, and ability. Anyone who knows you or Jenn the way I do knows that you both have outstanding work ethics! Unfortunately, in a typical job search situation… the people making the hiring decisions don’t know the people. Therefore, they often draw (potentially quite inaccurate) conclusions from things like resumes.

Jenn:

Thank you again for writing this wonderful piece. ;) This really is an important topic that affects so many chronically ill patients (endometriosis patients or otherwise). You had a great idea to cover this for Endometriosis Awareness Month.

I am honored to share your piece here; I think this really is a topic deserving of more discussion. You and your blog mean so much to me too! I’m grateful that we connected online.

It saddens me to think how many people can relate too. The reality is that the vast majority of people reading this post probably can relate to the serious financial burden of illness on some level.

It is a tough situation. There is certainly discrimination for medical reasons. I do think, though, that the current state of the economy makes for employment gaps for many (including those who are healthy). So, a gap on your resume at this point in time might really not seem so out of the ordinary.

Diane:

I am so sorry about the experience you described from your 22nd birthday. :( One would think that fainting would be a valid explanation for being 10 whole, huge, whopping minutes late!! (Insert heaping doses of sarcasm here. I am so sorry that happened to you)! That must have been traumatic. :( I’m so sorry.

While I am so happy that you are in a much better place career-wise, I’m sorry that your medical conditions make it challenging. I am glad you have the flexibility to work from home or not be “exactly on time”. Flexibility like that can make all the difference!

I wish Jenn (and Endochick soon enough) luck on finding new jobs too. ;)

Jannie:

I agree that Jenn was brave to share her personal journey on the emotional, frustrating financial roller coaster ride she talked about.

I too hope she finds the right job for her. As you said, she has a lot to offer! ;)

Those were the days when insurance often covered 80%, huh? Nowadays, the deductible alone can be cost-prohibitive when something like a laparoscopy is needed. :( I’m sorry you’re without insurance.

Jenn is most definitely upbeat and persistent. Like you said, the gap nowadays isn’t so unusual. So, it may be less of an issue at this time.

Thanks, Jannie! xoxo

~~~

Jeanne

7 AmandaNo Gravatar { 03.25.11 at 1:09 pm }

I think it SUCKS that you guys don’t get free healthcare. Just yesterday I found out a friend who has so many allergies there are about 20 food items she can eat and that’s it has been refused the medication that could help her because her insurance wont pay for it. I am truly constantly shocked by it and realise how lucky we are to have the NHS over here (in fact, would you believe, that during pregnancy and for a year afterwards a woman gets free dental care and free prescriptions and all children under 16 or those under 19 and in full-time education also get these things free!)

But even so, Endo can still have major financial implications over here too… I had to give up work due to becoming too ill to work and have struggled to find work since recovering enough to look for employment. Thankfully we have the DDA (disability discrimination act) over here and employers cannot refuse you employment due to health reasons like this, so I personally tell them upfront in the interview because then they HAVE to come up with another reason not to employ me, which is hard if I am perfect for the job. It still isn’t ideal and probably loses me job opportunities anyway, but having faced very “clever” and untraceable discrimination in my previous job due to the Endo, I refuse to let them start from the beginning with me.

I am rambling… sorry! I just feel so sorry for you guys on the whole healthcare situation and having to find insurance and pray that one day you all get a better deal from your government on this, because being ill is hard enough, without being out of pocket as well!

8 ShaunaNo Gravatar { 03.25.11 at 3:58 pm }

Dear Jenn,

Wow what a fantastic post! It is practically impossible to explain just how chronic illnesses affect the parts of our lives that have to do with financial strain and employment issues to others that do not have to deal with these.

So true about the gaps in employment being something that no employer ‘likes’. But are the American hiring people becoming unrealistic? Are we not human? We know that these people in HR, the heads of companies, etc., have dealt with their own medical issues. It is just not possible for anyone to not have had some kind of health concerns, even if it may simply be extended flu one season.

Trying to keep our medical information private, yet also attempt to gain employment with gaps in our resume; leaves us where I wonder? This is a huge issue and needs to be addressed by more than just us, the ones that are in the seat of job seeking. Employers really need to realize that some of their best employees are those that have dealt with illness and pain, for that makes us stronger people. We know how to multi-task in life, and that makes us able to multi-task in a job!!

I am frustrated with this issue and it was really good to read this as I am dealing with the possibility of returning to work, and yep– ‘I got gaps!!’ But that does not make me any less of a good worker.

Gentle Hugs—-<3
Shauna

Hi Jeanne!! How goes it honey? My email is secured now, and still the same addy, FYI. :)

9 JeanneNo Gravatar { 03.26.11 at 10:10 am }

Amanda,

The Affordable Health Care Act was signed into law on March 23, 2010. So it just had its one year anniversary. It will not take full effect, though, until 2014. (The health care system is so complex that it takes time to make the transition from the way things have been to the way things will be).

Here is some information on the law:

HealthReform.gov: Fact Sheet: The Affordable Care Act’s New Patient’s Bill of Rights

Do your eyes hurt yet? If your eyes aren’t too tired to take in some more information about the new law, here is a more detailed explanation:

Patient Protection and Affordable Care Act

Here (from the above link) is an example of a change that is already in effect:

“Dependents (children) will be permitted to remain on their parents’ insurance plan until their 26th birthday”.

By the time I was 26, I had had three laparoscopic surgeries to remove endometriosis. If only this had been in effect then!! The insurance I had at the time covered part of the cost but my parents helped with a great deal of it because I simply wasn’t earning enough money to possibly pay for my portion of the surgeries. Had I been on their policy, the insurance coverage would have been MUCH better and they wouldn’t have shelled out all of the money they did to help me pay for my laparoscopies!

This law isn’t perfect but it is a start, in my opinion. It is something that I believe can be built on to make future improvements. I definitely would have liked to see a single payer system myself. However, I am grateful that the improvements contained in this law are significant. Not everyone may agree with me. In fact, there are plenty of people who don’t. However, I am grateful for the positive changes this law provides (or will provide… once everything is fully rolled out in 2014). I am not naive enough to think that there isn’t room for improvement. There is. However, I believe this law is a significant improvement over what preceded it. It’s a start, I believe.

I generally try not to get political on my blog but it is quite impossible for me not to speak my mind about health care…. given what I have personally experienced! We have almost lost our house three times thanks to my medical bills. The amount of stress and turmoil we have experienced over the years because of medical debt is just immeasurable. I personally believe it is immoral for people not to have access to basic health care. Also, I am troubled by the vast amounts of misinformation I have seen about health care reform. It really upsets me.

I’m sorry to hear about your friend who doesn’t have the coverage she needs. That is wonderful that the dental coverage and prescriptions that you mentioned are fully covered for the groups you indicated. I’m glad that you feel lucky to have coverage with the NHS. ;)

I know you had quite a struggle with that last employer! I know from what you’ve described that you definitely have much more protection against discrimination in the UK than we do here. Hearing the process you went through at that last job was an education for me since we don’t have anything like it. While that job didn’t ultimately work out in the end, just the fact that they had those reps meet with you and such was something I’d never heard of before. I think it’s great that you have taken the experience you went through with job discrimination to try to avoid getting into another (similar) situation again. No one needs that kind of stress!

No worries. You’re not rambling. The health care situation is still unfolding since the law hasn’t been fully implemented and because there are forces fighting against it and hoping it will be repealed. (Please don’t get me started on that). Again, I’m fully aware that there are people who do not agree with my ideas about health insurance. I just cannot restrain myself from sharing at least a bit of what I think about it when I read a blog comment like yours, Amanda.

Hopefully, more improvements will be made and efforts to repeal the law that has already been signed will not succeed. It pains me to see the time and energy (not to mention money!) being spent to try to undo a law that, while not perfect, helps people and contains improvements. The elimination of pre-existing conditions alone is a huge deal in my book!

Jeanne

10 JeanneNo Gravatar { 03.26.11 at 10:41 am }

Shauna,

I agree that Jenn’s post really is fantastic! It’s true that those who have not experienced it firsthand seldom understand just how profoundly finances and employment situations can be affected by chronic illness.

You bring up a very good point… The notion that many companies have reached the point of being unrealistic. Trimming the fat and laying off workers to keep the workforce “lean” is one thing. Having one person perform a job that was once performed by 2 or 3 people is quite another. Some companies really are unrealistic in what they expect. It is hard to comprehend how people who, presumably, have had to deal with some sort of health issues (personally or for their loved ones) can be so inflexible and demanding of employees when they encounter similar challenges.

This really is a huge issue. There are so many people struggling with these issues. As you said, some of the best employees are those who have navigated challenges and who may well persevere beyond even what a healthy person might… simply for fear of their job being in jeopardy.

It is frustrating. Best of luck to you with trying to return to work! I know you have had challenges with this and I hope you find something that’s a good fit. I agree that people with chronic illnesses can make excellent workers!

Gentle hugs back to you. ;)

Jeanne

P.S. I’m glad your email problem is sorted out. Thanks for letting me know.

11 JennNo Gravatar { 03.28.11 at 7:48 pm }

Thanks so much to each of you for your kind words and thoughtful comments! I’m sorry you have also experienced these types of financial issues and worries.

I recently read an article (can’t seem to find the link) about discrimination against all unemployed people. It discussed the tricky ways employers are able to get away with not hiring unemployed people. It made me sick and increased my worry.

Another reason it is a complex situation is because I don’t want to end up working for an employer who won’t understand my health issues. (Good luck with that one, right?!) My endo won’t care if I have a new job, so the issue will eventually arise. I am keeping the faith that I will be able to find the best job for me and my circumstances.

Thanks for the support ladies.

Hugs to all of you too. :)

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