I have been meaning to write this post for a while but the thought of sharing my voice felt a bit self-glorifying so I held back, until now.  I realize that I may not be the only one holding back, so I decided to open up about getting involved in case others are feeling similar.  That is, wanting to give back maybe, somehow, not certain how, but also not ready to or feeling any desire to rally a crowd or become a spokesperson of any kind, any time soon.


I was diagnosed with ulcerative colitis 11 years ago, at age 16.  I have worked on research studies coincidentally linked with IBD since I graduated college and am currently working alongside a lot of big-shots in IBD research while getting my Master’s in counseling.  Speaking about my disease comes easily, trying to create a buzz about it does not.


For months I have been contemplating why I am not more interested, more invested in becoming more involved.  But what I also have been questioning is what it means to be involved and at what level it is acceptable.  Whether it is participating in a research study, writing about your experiences, sharing your story with a friend or broadly campaigning for awareness; being involved with a disease that has debilitated you in some way can seem daunting, overwhelming.  Why would I want to think about my disease any more than I have to?  Doesn’t thinking and stewing about this condition only make things worse?  Sure it can.  So if getting involved doesn’t feel right for you, at this time in your life, at this stage in your development or at this phase of your condition, that is OKAY.  Getting involved should make you feel comfortable and empowered.


This reminds me of the times I practiced meditation when I was really sick.  I did not focus on or contemplate my disease, no.  Instead, I visualized light radiating above my head where I pretended I was HEALTHY, that I was healing. I did better forgetting I was in pain, had chronic bloody diarrhea and had to eat a limited diet.


A friend recently shared an article with me called Engagement in advocacy: Not an all or nothing thing.  This resonated with me.  People considering getting involved come from all walks of life. They might be sick or in remission, they might be emerging from or deep within depression, they might be moving on with their lives happily and healthily and never looking back at the disease, they might be graduating from high school, college or grad school, they might be committed to another cause (just as worthy), they might be mothers of other children, grandparents, friends, doctors or researchers who wish they could do it all but don’t have the time or resources, they might have more skills and resources or less than others, and they might have limited or unlimited availability for whatever reason.


No single situation or story is the same.


A spectrum of ways to be involved, which encourage and empower every person at any stage to jump in, will welcome more people into the fold and build a community that represents everyone’s uniqueness, as well as our commonalities.


I encourage each person to consider what makes them comfortable. Your voice, your experience, your time has value however you choose to share it.


[Editor's note: This post was shared by Elizabeth Monti Sullivan. Liz works at the James M. Anderson Center for Health Systems Excellence leading efforts toward establishing a mentoring program and coordinates health care innovations like Passive PRO as part of C3N Project team.]

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