In my graduate student life, mentoring is a big deal – not only students mentoring other students, but also faculty mentoring students. There is a lot of emphasis placed on this in graduate school, as academics want to breed other academics, and feel that they are instrumental in creating the next generation of scholars.
I think less about mentoring in my illness life, but the more that I think about it, mentoring does play a large, although maybe less readily obvious part, in the chronic illness experience.
There are two types of mentoring that I’ve experienced: formal and informal mentoring. To my mind, informal mentoring is more common than formal mentoring in the chronic illness community. To me, informal mentoring consists of many of the interactions we have online with others. I’d like to think that the blog posts I write for my own blog and the articles I write for HealthCentral, are in some ways mentoring, even if it’s not a one-to-one interaction necessarily. People leaving comments and advice on what I write can also be considered a form of mentoring, as well.
I can also think of one example of formal mentoring. When I was on Humira, and was having lots of problems, I found out that Humira provided a mentoring program, and thought it might be useful to hear from someone who was doing well on Humira. I e-mailed back and forth with my assigned mentor several times, but honestly, did not find it extremely helpful. Partly, I think that was because she was in a period of high disease activity and I was coming out of a Humira-induced lupus flare. There was also no real direction in the relationship. It felt put on to me.
When I went to look for information about the Humira Mentor program to include in this article, I found out that the program has been discontinued. Explains why I never heard back from my mentor after our first few exchanges. It would have been nice to have been told about that directly, though. And while it’s unfortunate that the program no longer exists, I cannot say I am all that surprised.
I also felt a bit weird about the program because I was not having good experiences while on Humira, and then when I was finally taken off of it, I did not feel that I would have been able to give back to the program.
So here is something set-up, institutionalized, in terms of mentorship, and it just doesn’t work.
I think it is sort of like in-person support groups. My experience with the several I’ve been in is that they just don’t work that great. A lot of times, because of illness, the people that attend are not the same every time and this can be jarring, or it may feel awkward to share things with people you don’t know. Sometimes the leader of the group has to cancel multiple meetings due to illness, which causes the group to meet inconsistently and then it fizzles out.
I think that in the case of chronic illnesses, especially RA, informal mentoring may seem like there are lower stakes involved, when in fact, I think these types of interactions can be more meaningful than ones that only exist for the purpose of mentoring. What I mean is, you can read a blog post or not, comment or not. You have the ability to decide when you want to participate, rather than feeling obligated that you have to attend a weekly meeting or some other more scheduled event.
This is to say that the efforts that take place online shouldn’t be downplayed just because they aren’t what we might think of officially as mentoring. These interactions can be transforming, as I feel they have been for me. My online community has gotten me through some of the more difficult experiences I’ve had with my illnesses.
In terms of chronic illness, the major place that I see mentorship lacking is within the realm of higher education. Given the competitive environment, neither students nor faculty are open about their illnesses. This creates a culture of fear around disclosing such information, but it also creates a sense of isolation and aloneness. This is something that I hope to address more in the future.
For now, I rely on the people outside of academia, those that I met online, who can share their experiences with me, and I with them.
So whether we call it mentoring or not, the communities that we have created online provide us with access to others like us. We can share our experiences and offer advice to one another. And even though it’s not required, there tends to be an ethic of payin