Monday, April 20, 2009

Young Adults, Chronic Illness, and Employment

Just a few weeks ago, I wrote a post where I confessed that the
smaller daily challenges of being employed with chronic illness
were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?


Miss Waxie aka A Comic Life, Indeed said...

Oh, how this post hits home.

I was just thinking the other day, how it's been socially exceptable for me to live at home and not really be employed this past year. After all, when someone asked me what I was doing, I could shrug and say "oh, i just graduated from nyu, so I'm just taking the year to figure that stuff out." They'd smile and tell me it's hard being young. And every part of that interaction was socially hunky-dory.

Well, with May rolling in and a new batch of graduates *actually* graduating, I can no longer claim to be "a recent college grad". Now, I'm the girl with 5 autoimmune disease who lives at home with her mom.

It's a rude, frightening, horrible awakening.

Like you, I'm a writer, so I guess I'm lucky in the sense that I can make a living from my couch. I've gotten some an article or two published (not bad straight out of college I guess) and get fairly good traffic (and enough money to support a coffee habit) out of a blog I write about celiac disease (the fun autoimmune disease, as it involves creative baking rather than injections and steroids). Still, I'm jealous, so jealous, of my peer who are actually DOING things, who still live in New York, who are utterly afraid of what their lives will bring, and what will happen if they fail - but at least they actually get to try.

I'm logging all of my experiences as a young person who lives life chronically ill in my (hopefully comedic) comic strip called A Comic Life, Indeed. (I actually added you to my blogroll last week).

I hope you'll check it out and good luck with your speech!

- Miss Waxie

Jessiflute said...

This really hits home. I'm 28, with various back issues that I have dealt with since childhood. I graduated college, began a teaching career that I loved, but ended up having to go on the school system's disability system due to multiple surgeries I needed to have and the lack of modifications they were willing to make for me in the workplace. I am sadly having to deal with the loss of a job I loved, as well as many personal issues (having to put a family on hold or not be able to have kids at all because of my back issues, adoption not an issue because all funds go to med. bills; not being able to go out and do things with my husband and stepson, etc). In the meantime, I am studying up on becoming certified in an area that would allow me to work from home (medical coding). However, my previous training and degree did not qualify me for any job I can now physically perform. Being young, and the fact that no one can "see" my back pain, it is very difficult for me to convince others that my problems are real and that they are and will always be ongoing. I think it is hard for many people to grasp chronic illness in young people.

Laurie said...

Hi Miss Waxie,

Thanks for the note! I hear your frustration. But it sounds like you are doing things--you're building a foundation that uses your skills and talents! I checked out your blog and love what you're doing over there--so creative! I'll add it.

Jessiflute, you hit the nail on the head. People who are young are not "supposed" to be sick or look sick--so obviously they can't *be* sick, right? Sounds like you have had a challenging time and have already had to make a lot of accommodations. I think it's smart to set up a job you can do from home, and I hope it works out okay... though I totally see why it's frustrating when you already put so much effort into another career path.

S said...

This is a very timely post for me. As a young woman with five years of undiagnosed chronic pain (RSD, most likely), I've spent my entire adult life in the working world dealing with this. I think I'm lucky now, I'm in a job where I can be relatively honest with my boss, and she respects and trusts me. The thing is, the only reason I have that is because I work to the point of exhaustion. She knows that I'm not lying or shirking because of how dedicated of a worker I am. At some points (some weeks), this becomes too much and my body crashes.

Being young in the work force with chronic illness also leaves one with a distinct lack of hope. I struggle with the questions of how I'll ever be a working mom or how I'll work when I get worse. I'm out there, working, doing something I love, and I appreciate that. But, I don't ever want to lose it. Its a balance, and I guess I've found that in order to have what I want from work, it has to take more than I give to my body. I don't know how long my body will continue to allow that.

Unknown said...

you said "What are you if you are young and not working?"

I graduated from High school last year. I'm currently not able to work or go to school. I'm able to be fairly involved in church activities through my young single adult congregation. The other young single adults are going to school and working. It's hard for me because people ask what I'm doing- "are you going to school?"
"um.. nope"
"oh, just working at the moment?"
"uh... still no."
By this point people usually have cocked their head sideways and have a funny expression on their face. And then I have to decide whether I want to explain that I'm sick or to just leave it. I usually opt for explaining that I have some health problems that keep me from doing either, but I'm tired of doing that- I don't want to be the "sick girl" that tries to get everyone's pity.
It is truly discouraging at times- struggling with my situation and watching friends move on with their lives, especially when I once had plans to be right there with them.
I'm grateful, though, for my beliefs and for the support I get from my friends. They all try to be understanding and do well at not looking down on me because I'm not in a normal life situation.

Loretta said...

Well, this post hits close to home. I am 27 yrs old and live with a invisble chronic illness. Alot of people look at me and see I'm look normally quite healthly. What they don't see, is how each day is a struggle day for me. I get short of breath with little extertion and exterme fatigue.

The hardest part of me is planning realistic goals for the future. There's many things I want to accomplish. Of course, they are things that Im phsyical not able to do. I'm jealous of my peers. I see them DOING things in life... and wishing I could be DOING things in my life too. I must keep a healthly balance and not push my body.

I also hate when peers ask what your work. Yes, I am working. But to me, it's just a job... and not a career. Most people my age now are working on their career... moving up and figuring out what they want to do in life. And here I am... working my same job... and unable to figure what what I want to do.. because I don't know when I phsyically won't be able to work anymore.

I am grateful though for the my friends, family and the people I work with.

A said...

I found this post and it hits home much like it apparently has for so many other people.

I became ill a year ago with an invisible, very controversial, un-understood and debilitating disease. Just as you mentioned, the young aren't supposed to be sick but they should be working and pushing on with their lives.

I have always been a career minded person who chose to work in my career while going to school. This was a longer route, however, I get to have my employer pay for my schooling and I get to graduate without debt. When I became sick, school was the first thing I had to let go of along with the majority of my dreams I had so carefully planned out.

Now when friends ask me what I am up to, or when strangers ask me what I do I can no longer say that I am anything of value. In the area that I live this reality shortens the conversations I have with others drastically. I live in Washington DC where you quite literally are what you do.

Now a year into my disease with little hope to being able to overcome it as reality is that others in my situation have not and will be fighting it for the rest of their lives, I am starting to accept what I really am capable of in my condition. With this economy downturn I am on the cusp of losing my job due to the neurological side effects of my disease and if that were to happen… I have no idea what or where I would turn.

I feel helpless as I watch my life unfold in front of me with little to no control over it. CI forces a "young adult" to grow up much more rapidly than our peers and we feel stuck in limbo no longer able to fit into our own age group but to inexperienced and young to fit into the next either.

I have heard from the older generation time and time again, "your young and you'll bounce back, time is on your side." While this may be true to some degree it does not help my current situation as I sit and feel as through my "time to shine" has been stolen from me.

Brit said...

I was diagnosed with a severe stage IV lung disease at 23. My career as a pastry chef had almost killed me and any attempts to stay in the industry only caused more hospital stays.

I had quit college to go to culinary school and was faced with finding a job that had absolutely nothing to do with the only degree I had. Not to mention I was still very sick, even if it wasn't visible. Between the mounting medical bills and need for insurance, I took the first receptionist job I could find. Fortunately, it turned into an opportunity to be trained on the job to design for an engineering firm. I found a career with no schooling that I never expected to have.

Of course with the current economic climate my pay has been cut in half and my insurance will be dropped in a few months. There are no open jobs in my industry so I'll be starting over again, with a new, unknown career. Still not well enough to go back to kitchens, so it's back to square one for me. People assume that's an opportunity to find something I really love to do, but honestly, it's take the first thing that can pay the bills and has decent insurance. Maybe I'll hate my job, but at least it'll keep me alive.

Anonymous said...

I have a lovely combination of serious illnesses and chronic illnesses.

My gallbladder failed on my 16th birthday and no one at school believed me so I never got enough time off from school to get the proper tests. I went four months with a non-function gallbladder. I ended up having emergency surgery and suddenly no teachers at school were arguing with me over grades or reporting that I was bulimic. Then, I was diagnosed with the ever present issue of IBS not long after. I've managed to finish school, get an Associates of Arts, and now attend a local university online for ease of medical appointments. I cannot handle a full time job that isn't flexible so I am a babysitter/nanny and worked as a political campaigner during the election. I do love my work which helps) and I chose my own hours.

Now life did get worse last summer when I developed a horrible case of diverticulosis and a handful of colon tears, hemmoroids, and infections followed. I work less, and hard to drop a few courses but maintained my full-time student status. I ended up finding a job that paid enough to cover the semester and doctor fees. I have less that 300 dollars in the bank and owe my parents 500 dollars in school books but I insist on staying in school and am apply to law school.

I am frightened since I just turned 21 last week (I have waited so long to start drinking) and now have liver problems, so no drinking for me! I'm taking it all in stride. The only thing is that if this was cancer or cirrhosis I could get the time off from school and work to heal. If it is just another disease I must keep going without the rest I feel that I desperately need.

I hate that I have been in charge of my education since I was sixteen and working as a babysitting and campaign work since I was 13, but I'm too ill to ever think of not declare myself my parents' dependent out of fear of losing my health insurance, well at least until I'm 24 years old and still enrolled full time in school.

The red-tape of taking a break from school/work is crazy. I have to go to school to keep my health insurance and I have to go to work to keep paying for school.

I actually added up the time I have spent waiting for my many diagnosis and it is more than a year and this year makes five years of since my gallbladder failed and fell into this digestive hell.

If any has advice please share because besides prayer, family, and the occasional check from extended relatives I am constantly jealous of 'normal' 21 year old students. Plus the constant fear of the what is next in for my old man body (even though I am a young woman)!?!

Anonymous said...

I am 23 years old and I am about to graduate college. I have had a chronic illness all my life. I want to get my master's degree in Physicians Assistance but I am very afraid of losing my medical insurance in order to pay for my medication. Does anyone have any advice?

Where can I turn to get financial help with out allowing my illness to define me and my career. I don't want to to just take the "safe" and easy route. Should I just get a job to get benefits or do what I really want to do?

I want to enter the medical field and help people. I know everything is in divine order but I am ready to turn the page for the next chapter in my life.

Anonymous said...

I never wanted to be any ones charity case, any ones burden, any ones liability. I am still trying to graduate from college and work a full time professional life. My body reminds me of the toll I take out on it - when I literally sleep for 24 hours following three 12 hour shifts of work. Something my peers and people twice my age seem to do with out missing a step. This makes it increasingly difficult to make progress in school. I get so angry at my body when its just not up to the job everyday and angry at myself because I feel like I should be able to push through it but I know that when I do push too hard - I make myself worse. I am trying not to go on disability because I feel that finding employment after I've been on disability would be next to impossible. Additionally, the physicians I see are highly specialized and an increasing number of physicians don't accept medicaid/medicare. I don't want to move home, my family is not supportive. I am not married and don't feel right dating and getting men emotionally involved--- for them to later find out that they will likely have to take care of me as my level of disability increases with age....not to mention deal with all of my current issues. I wonder what will happen to me when I don't have someone there to help me. How am I going to provide adequately for my self later on? Should I even continue making the investment of a college education? All I ever wanted to do was go to med school and live overseas doing what I love doing most - helping people. I feel like its time to bury that and move on because I will never again be healthy enough to that kind of work.More than anything though I don't want to be dependent on another person for my livelihood, because it feels like giving up. I'm in my mid twenties. When I look around at my peers I feel so alone and behind.... and it makes me angry, it makes me want to fight for at least a piece of normalcy ...for stability...and then I can't help but wonder what is it all for and what is it worth?- CD, - with dysautonomia, parkinsonism.

Anonymous said...

Found this blog post by using Google search. I'm 22 years old and have been living with an undiagnosed chronic illness for the past 6 years (symptoms most fitting with hypothyroidism or lyme diseases). I've tried working for a short time after high school but it was a horrible experience for me. I worked the GY shift at a store and I would feel like absolute crap because it was physically demanding. In the end I just couldn't handle it anymore and the manager kept telling me that I was working too slow, so I quit.

Now I've been through 4 years of college and my parents don't have money to support me anymore due to the bad economy. My dad is basically at the point where he needs me to get a job or they will kick me out or ship me off to my grandparents to change. The worst part is they've never believed me about my illness and think that I WANT TO leech off of them for the rest of my life.

I'm currently looking for jobs and will probably end up working at a warehouse somewhere. It was feel like total crap and my health will deteriorate even worse but at least my parents will be happy.

I don't even care about my life is passing me by anymore. I know that I would be out there succeeding right now if I didn't have an illness that makes me sleep 10 hours a day and still feel horribly sick and fatigued.

I just wanted to vent sorry if this is getting away from the topic.

All I can tell you guys is keep trying to find out what illness you have and keep fighting to try and improve it or learn to live with it somehow.

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