Saturday, November 20, 2010

Do you share your human side?

This weekend has already been eventful for many reasons. For example, I got a twitter DM from someone asking about another Health Activist who wrote an uncharacteristically depressed post. When I read it, I feared for the author because the emotions were raw, and the depths of the depression were as impossible to deny as the warning signals it held.

I am a 'helper', but I knew I was unable to help my friend and this upset me. Not knowing what else to do from such a distance, I urged the author to call me so we could talk. #1 I wanted to be sure my friend was okay. #2 I wanted to touch bases with my friend so we could talk. I couldn't be there to give the author a physical hug, but I hoped hearing the voice of someone who understood at the other end of the phone would be cathartic.

As we spoke, my friend told me why the post was written... the author was experiencing what every chronically ill person experiences at some point, and they wanted to share it, not only for themselves, but for everyone else as well. The author was also burdened that patients looked up to them as somehow infallible or as a person that holds all the answers, when in fact this is far from the truth. The author's experience and weaknesses with their disease is no different than the experiences of those reading the post, and they wanted to share that process.

After all, we are human - right? As Health Activists, we are more than leaders or educators. We are more than supporters. To many, we represent the illnesses with which we deal each day. When someone comes to a community and sees positive, encouraging words, this means something to them. It gives them hope, and we all need a healthy daily dose of that. Yes, it makes them feel better about their situation.

When we express our deepest emotions and raw vulnerability, this means something to them too. It means validation of their own feelings of depression and inadequacy. It means they are not alone.

Depression is an incredibly lonely disease, especially when it is triggered by a chronic illness that may be "invisible" or misunderstood. Sometimes the depths of that depression fall so low that it is impossible to see anyone else but ourselves. But sometimes reading something like my friend's post makes us feel validated, especially when that friend is venerated as a leader in the community at large. Unlike talking to another person across a room or on the phone, we can read and re-read it and think about those words. We can go back to it later. Seeing other patients reply to posts like that further validates those feelings almost as much as if those comments are directed at that reader instead of the original author.

How do you handle the human side of your chronic health condition? Do you open yourself up and let the raw emotion and feelings flow, or do you think it's more important to keep those things hidden? Why did you choose to do that?

Comment by Amy K on November 20, 2010 at 8:49pm
Dear Ellen,

I'm sure you know I am a big proponent of letting the human-ness show. I don't hide it and sometimes I worry I don't hide it enough. Your post is perfect timing for our upcoming webinar on Monday, "Continuing Health Activism with Chronic Pain". This is a very real struggle for community leaders and participants. I do believe it is always best to let the real you show. We aren't superheros, we are humans, working hard to better life, but we face challenges like everyone else with chronic illness/chronic pain.

I'm sure it doesn't surprise you I would find it important to comment here, this crossover and connection between chronic pain and depression is my greatest passion as far as health activism goes. Our mental health is obviously going to be affected by our chronic illness in some manner and that can be dynamic and changing. When we need support and are feeling really low, it is certainly okay to tell the world about it!

It is such a gift to have other Health Activists such as yourself out there to support HA's in the community and just a reminder to you, there are people here for you if you ever need it, too! =)

Comment by Ellen S on November 20, 2010 at 9:57pm
Amy - I so hoped you'd see this post and tell me your thoughts! :) Thank you. This too is a passion of mine. I have never quite gotten the hang of finding the happy balance between the two sides yet, but I am trying. Sometimes I am afraid that when that raw emotion hits, I might say the wrong thing. Yet I am so very aware how I am touched when others share their human side, warts and all. That said, I will continue to strive toward finding that perfect harmony, and I love it that you would be willing to help me :) ((Hugs))

No comments: