Coming Out – Into the spotlight

Occasionally, I interview people about their “story” because I think it would be valuable for you to hear a different take on these issues – other than mine.

Today’s guest is Leslie Rott. She is 22 years old and was diagnosed with and is being treated for rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) in 2008. She had been dealing with various health problems for several years before receiving her diagnosis. Leslie is going to be a second-year graduate student in the sociology Ph.D. program at the University of Michigan. She recently started her own blog, GettingCloserToMyself . Leslie’s story — and so many like this – is why I created the home study system, Working With Chronic Illness Workbook.

Rosalind: When you got your diagnosis, did you think that you might have to change your career plans? If yes, why and in what way?

Leslie: At first, I did not really think about much else other than surviving until tomorrow. But then I started wondering if I could continue on the route of going to graduate school and becoming a professor of sociology. I think when I first got my diagnosis, I was not thinking realistically. I was thinking that I might have to leave school because I was feeling so bad and exhausted all the time, but I do not think I was really thinking that far ahead at the beginning, in terms of what the rest of my life was going to be like. My first instinct was to keep my life as normal as possible, and for me that meant staying in school and staying on the path that I had in mind.

Rosalind: Since then, have your ideas about your career plans changed? If yes, why and in what way?

Leslie: I question everyday whether my career plans are going to make sense now. But I am still trying to acclimate all parts of my life to my illness, so eventually I will have to face the career part of it. I’m the type of person who is really hoping my decision will be based on a doctor telling me that I’m working myself too hard and that I need to do something else. But the realistic part of me knows that, that is not going to happen and I am going to need to decide for myself. I’m mostly worried about the early years of being a professor, when you have to get a job and work hard to make tenure. That’s hard enough for most people without having the added layer of illness to complicate things.

For now, I am planning to stay in school, which will be at least four years toget my Ph.D. From there, while I am hoping to get a job as a professor, I have not necessarily made my mind up yet. I have put in way too much time and effort already to throw all of the hard work away. On the other hand, though, I guess I have to do what is best for me. With grown up diseases come grown up decisions.

Rosalind: Do you want to/ expect to keep working – and if yes, what do you think would make this easier for you?

Leslie: For me, I think that unless things get completely unbearable, I’ll continue working because that is who I am. And hopefully, whether my future career is in the field I had intended it to be or not, I will love what I am doing enough to make even the bad days worth getting up for.

Rosalind: How would you describe your level of motivation regarding school/work — and has living with illness changed this idea of yourself?

Leslie: That is a really good question. Before my diagnosis, I was all school, all the time. School was completely who I was. I think, in some ways, I had lost sight of the really important things. My motivation for school has definitely changed. I learned to let things go. I was, surprisingly, able to get good grades last year, despite everything that was going on. But I had to listen to my body, and if that meant not giving 100%, I had to accept that, even if I did not really want to. At least in the job I am at right now, I work really hard when I am there, but I do not have to really bring it home with me. For me, school is not like that. And I have a feeling my eventual career will not be as easy to turn off, either. This is the part that I really struggle with, listening to my body and knowing when to put other things aside.

Rosalind: Do you think that getting the diagnosis at the point in your development that you did (just starting graduate school I think?) was a particularly easier time or harder than at another developmental point (such as already being launched in a career and having a family perhaps or maybe being in your adolescence.)

Leslie: I think it was probably harder for a lot of reasons. I was about to live my dream and start to live on my own for the very first time (renting an apartment, paying bills, etc.). In some ways, I think I was naive in thinking that everything was going my way. And then came starting to feel awful all the time and knowing that something was very wrong with me and that I had to deal with it.

Being on my own for the first time, I did not have the support around me that I was used to. Luckily, my parents live only about an hour away, but I have had a lot of experiences over the last year on my own. Going to various doctors, getting diagnosed, blood tests, I have gone to on my own. I wasn’t used to doing before, and definitely not to the extent that was necessary in order to find out what was wrong with me.

I’ve also dealt with doing the everyday things by myself. Even when it was difficult to get out of bed, I took care of my apartment and my self. Maybe if I was married, or in a serious relationship, I would have more immediate help and support.

On the other hand, I’m well aware that not everyone is going to accept your illness. Having an intimate relationship fall apart because of this would have been too much to handle at this point in my life. Now I can ease people into it, I guess.

I know that I will always have the unconditional love and support of my family, but it’s hard to envision the people I still have yet to meet. I didn’t find my prince charming pre-diagnosis. Hopefully, post-diagnosis, he’s out there, proving that there is still some good in the world.

It was also hard because I had just met a lot of new people in graduate school and it is hard enough to meet new people when you know who you are and what is going on in your life. And suddenly I didn’t. And then you have all these ups and downs anyway, plus medication, and I was worried that people were never going to know the “real” me. I am still trying to build a social life. A more established person does not really have that problem.

That said, being hit with something like a chronic illness is never an easy thing for anyone. I just think that if you are more established and settled, more secure in where your life is at that point, your train does not get completely derailed and thrown off track. Also, I was not only trying to prove to everyone else, but also to myself, that I was self-sufficient enough to be on my own, to be considered a bona fide adult. And then, boom, suddenly I worried that I would not be able to take care of myself and that my newfound freedom would suddenly be taken away from me. The one good thing about not being in an established part of my life is that there is less to completely re-work and more to adapt as I go.

If this had happened at earlier point in my life, it probably would have made things much more difficult. I am not sure I would have been emotionally mature enough to handle a chronic illness and all of its repercussions. It probably would have vastly altered the trajectory of my life. It’s hard to say, but I probably never would have left home to go to college and beyond that, it is hard to say if I ever would have even considered graduate school.

Rosalind: What made you decide to start a blog?

Leslie: At first, it was started for purely selfish reasons. I had to tell the same stories to people in my life over and over again and it was exhausting. I couldn’t remember who I had told what. I thought it would be a good way to keep people updated on what was going on in my life. I also realized that I wrote things a lot better than I spoke them. There is a lot of misunderstanding that I received from other people concerning my situation and I felt like no matter how many times I said the same things, there were still people that weren’t getting it. I also wanted to get my story out there because I thought it was an important one to tell. I realized that if I could save someone the trouble of going through what I did, it would be totally worth it. As I’ve done more writing and more exploring of the world of chronic illness blogs, I’ve come to realize that this is definitely not just about me. There are a lot of us out there and I think we can really help each other. Originally, I hadn’t intended for my blog, Getting Closer to Myself (http://gettingclosertomyself.blogspot.com), to be so completely illness focused, but the more I wrote, the more serious the tone became.

Rosalind: Do you think that you would benefit from having more help around creating a career when you live with chronic illness – and if so, what kind of help would be most useful?

Leslie: For me, since I have not actually had a bona fide career yet, I think that it would be helpful to have guidance in this area of my life. Most specifically, I’ve had a difficult time with disclosure, in general, but especially when dealing with school and the job that I hold currently. I know that we cannot predict how everyone in our lives are going to react to our situation, but it would be helpful to be on the ready for whatever reaction comes our way.

I also think that, going through the type of education that I am, I have sort of been conditioned to think that working all the time is the only way to be. I think until this point I have planned my life around school and work, and now I have to plan everything in reverse. Right now I’m working a 40-hour a week job and it has been really hard to get used to. It made me realize that for people in my situation, your normal, everyday job is not necessarily the best suited to my needs.

Right now, as a graduate student, who needs to work in order to pay rent, I am doing what I have to do. Clearly, though, even though I am sitting at a desk all day, it is taking a lot out of me. But right now, I am doing what I have to do. It would be nice to know how to deal with the practical concerns – working enough to survive, working enough to have health insurance, if that is an issue, working enough to feel fulfilled without burning yourself out.

I think a lot of us go from being really productive people to having to examine and reevaluate many parts of our lives. I still want to be a productive person, but in a different way than before. And I guess I have not discovered how best to do that yet – whether that means changing careers, finding a job at a place that will support my unique needs, becoming my own boss, or whatever other possibilities exist.

Rosalind: Is there anything else you want to share with my readers?

Leslie: For me, there was a year period between when I really started feeling bad and receiving a diagnosis, although I realized later that I had been having periodic symptoms for several years. I think my experience was quite “typical” of others with autoimmune diseases.

At first, doctors met my symptoms with skepticism. It is a very long process, and by no means easy. The major thing I have learned is that no one knows our bodies better than ourselves. I’m only starting to realize that living with illness is an ever-evolving process. Adaptation to and acceptance of illness is not something that happens overnight. But illness does make you realize the importance of the decisions you make for your life and that you have to make those decisions for yourself and no one else.

This is a big step for me, doing this interview. Maybe some people out there are thinking, wow, big deal, she answered some questions. The first thing my mom asked me when I told her about this was, “Are you sure you’re doing the right thing?” And I didn’t even really have to think about the answer to that. While others in my life might deny what’s happening, it’s time that I step up to the plate and acknowledge it, make it real for myself. And I think this is the first step to that. The blog has sort of been a progression to this point.

Rosalind: Thank you for sharing this, Leslie. As a mother (and a career coach), I can appreciate your mom’s concern. And for both those reasons, as well as a person living with disease myself, I appreciate your desire to “come out” with this. Have any of you had similar — or quite different — experiences to Leslie?

FYI – Many valuable tools and suggestions around these issues are in my home study system: Working With Chronic Illness Workbook! Filled with ideas about how to figure out what career would be best for you in the long run – the workbook gives you the tools to make good decisions that work for you.

Rosalind aka cicoach.com