Chronic Rants

A friend of mine does suicide prevention work.  And she needs your help.

From time to time I pass along information to my friend that I think might be useful.  Sometimes it’s a blog post, or a tweetchat, or just an idea.  Other friends do it too, to give her ideas for new angles.  Recently I sent her a blog post from someone else’s blog that I thought might be helpful and she wrote back and asked if I’d give my personal perspective on living with a chronic illness.  I’ve always been completely open about my health stuff when someone asks, but I don’t talk about it too much otherwise.  I’m not trying to hide anything, I just want to focus on things other than my health sometimes.  So when we met up this week, I found that first I had to explain what it really means to have a chronic illness.

We met up in person to talk about chronic illness and its intersection with depression.  This is an area that gets talked about a lot in chronic illness circles, but I don’t hear much about it in mainstream mental health care.  As it turns out, they do talk about it in her office, but she didn’t feel they’d examined it thoroughly.  So we talked for over an hour and we covered a lot of areas.  We talked about the depression that is a part of the illness, the depression that’s a side effect of medications, and the depression that comes from the pain, isolation, frustration, etc.

I talked about being told the symptoms are all in our heads, about the self doubt, and about not having a diagnosis for years or decades.  I talked about the strain it puts on relationships and the difficulty dating.  I talked about the lack of control over my present and the lack of control over my future.  I talked about rare conditions taking longer to get a diagnosis, but then not having support groups available after diagnosis because of the condition’s rarity.  We talked about chronic illness causing PTSD.  We discussed autoimmune-type diseases versus more well-known chronic illnesses such as heart disease or diabetes.  We talked about society’s judgment on us: society saying that we caused our illness or that we’re worthless because we can’t work at a job, etc.  We talked about stigma from government and from individuals.  I talked about our own feelings of worthlessness.  I talked about wanting to contribute to society in some way.  We discussed how hard it can be to connect with family and friends when we can’t do “normal” activities.  We talked about how hard it is to “keep a positive attitude” when the truth, the reality, is that things will not get better, and they will most likely get worse.  And of course we talked about the 5 stages of grief.

She was blown away by all of this.  When I talked about being in pain all the time until a few years ago, it became clear that she hadn’t realized that it was literally all the time.  When I talked about the relief of having a few minutes at a time without pain, she was shocked.  This is a woman who has always tried to understand, but she simply didn’t because no one had ever really explained it to her.  Now she’s learned a bit more.  And of course, she wants to help.  She can not help with the physical symptoms, but she can create practitioner trainings and outreach programs and also write on her blog in order to help our mental health.  And in return, we can help her.

So here’s where you can help.  I am only one person.  I told my friend about my own experiences and about those of some others in the community, but of course I can’t talk about everyone, nor should I.  Instead, I encourage you to talk about how your chronic illness affects your mental health and vice versa.  Write a line or 2 or 20.  Comment here, email me (msrants at gmail dot com) or write to me on Twitter (@CIRants) and I’ll be sure she sees it.  This is a good chance to assist someone who wants to help our community, so let’s give it our all!

Part of the email from my friend:

In my work, we do talk about chronic pain and illness in relation to suicide, but we haven’t done a thorough job of examining the issue, I believe because we’re not sure the best approach to take…. I’d love to talk with you about ideas/approaches for addressing this issue and possible interventions/programs. Or, if you know of folks you think would be good to talk with – people living with chronic conditions, health care providers, etc. who I should talk with, please let me know.

This entry was posted on Friday, September 28th, 2012 at 8:31 pm and is filed under Educating, Healthcare, Isolation, Pain, Raves, Support, Symptoms. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.