Many of us will be forced to deal with being diagnosed with a chronic medical illness in our lifetime. My time came when I was diagnosed with Multiple Sclerosis in my early forties. In addition to coping with the symptoms of my disease, I also had to find ways to combat feelings of depression, stress, and anxiety. I was given the opportunity to discuss my personal experience in dealing with both a chronic medical illness and depressionin an interview given by Lene Andersen, the community leader for HealthCentral’s rheumatoid arthritis (RA) site. In return, Lene has graciously agreed to tell her story for our Depression site about how she copes with RA and depression.
All about Lene:
Lene Andersen is the Community Leader for HealthCentral’s rheumatoid arthritis site and has lived with RA since she was a child. Lene has a background in social work and human rights, but is now working on a second career as a writer and photographer.
Tell us about your experience with RA and depression.
Depression in varying degrees was part of my life until about ten years ago. I spent a lot of time in hospitals as a child and when I was 16, I started using a power wheelchair, which allowed me to go home. However, having a very visible disability made me different from everyone around me — I was the only one in my high school who used a wheelchair. Much of my depression has been related to having a disability — I felt very isolated, different and alone. And then there's the fact that the world isn't terribly accessible, which can really get to you.
My RA has also been a frequent source of depression, primarily during flares when the disease becomes more active and impacts my ability to live my life. I had a horrendous flare in 2004 that essentially ate my life and by the end of the year it was so bad I could only get through each day by giving myself an out. I made a promise to myself that if my doctor and I hadn't found a treatment that worked by the next summer, it would be okay to give up, to kill myself.
Luckily, in the beginning of 2005 I started Enbrel, one of the newer biologic drugs for RA and it was a miracle medication for me. It gave me back my life in the most literal way possible.
Are people with chronic medical conditions like RA more susceptible to developing depression?
When you get diagnosed with a chronic illness, you have to grieve the loss of your healthy self and it's normal to feel angry and depressed. It can take quite a while to work through these feelings. In addition to the depression that may be experienced after diagnosis, RA itself is associated with depression.
People who have RA are depressed twice as often as the general population. Some have suicidal thoughts. RA can place limits around what you can do, preventing you from participating in your family, at work, and in your community. Historically, the longer you had RA, the more likely you are to experience limitations, and more likely to experience depression, as well.
New treatment approaches such as the biologic medications have made a big difference in the prognosis of RA, making remission possible. In the long term, I expect this may have an effect on the rates of depression.
Are there certain aspects of having a chronic medical condition which makes one more prone to depression?
In addition to the frustration of not being able to do activities of daily living, such as brushing your hair, having difficulty pulling up your pants, and so on,, conditions that involve chronic pain throw an extra wrinkle into the mix. Being in pain all the time is exhausting and when it's really bad, it can feel as if you're being tortured 24 hours a day. Not surprisingly, this can lead to depression and can start a vicious cycle as being depressed increases your body’s sensitivity to pain.
Sometimes, this kind of depression can be addressed by attacking the problem from a different direction. Several years ago, I saw a psychiatrist and after a year or so, we tapered off my sessions with the understanding that I could make an appointment if I needed it. I'd make an appointment every 3-4 months and it took me a while to realize that I needed a "refresher session" when I had trouble coping due to pain. Once I figured this out, I called my rheumatologist who put me on a medication to suppress my RA and then I didn't need counseling anymore. If you live with chronic pain and are feeling depressed, the solution can be to get better pain control.
What part does acceptance play in preventing depression for someone who has RA?
Acceptance happens the moment you let go of a sort of magical thinking. We all have moments of believing we're in the middle of a particularly unpleasant dream, or get caught up in thinking that maybe there's a fairy godmother out there with a magic wand who’ll make it all go away so we can get back to our real lives. Acceptance happens when you wrap your head around the fact that this is your real life, that from now on, reality will include a permanent partner called a chronic illness. And that's the point when you can begin to build your life with and around your condition. That's often when you begin to find happiness again.
Acceptance, like the other stages of grief, is a fluid state, one that you move in and out of depending on how you feel. In my experience, it's also something that needs to be closely guarded. It's very easy to get derailed into thinking about what ifs and that can drag you right down into depression again.
How important is support in all of this?
As mentioned earlier, living with a chronic illness can make you feel very alone. Even when you have the most loving and supportive family and friends, they don't truly know how it feels unless they have a chronic illness themselves. This is where websites like HealthCentral’s RA and Depression sites are so valuable because the users in these communities have been there and know what it's like. There is such an incredible peace in feeling known, such a deep, internal sigh of relief when you read someone's story and it's as if they are writing what's in your soul. It can be a lifesaver.
What advice do you give to members of come to the RA site and also have depression?
The first piece of advice is always to make sure their RA is suppressed and they have proper pain control. This means I recommend they see their rheumatologist and possibly a pain specialist. I’ll also recommend counseling, particularly by someone who specializes in cognitive behavioral therapy, as it seems to be very helpful for people who live with a chronic illness. Mindfulness, a practice that brings you into the moment and makes it easier to connect to your body, to joy, can also help you cope better – Jon Kabat-Zinn’s Mindfulness for Beginners is a great start. I always refer them to our Depression site, as well.
Do you have any special philosophy or mantra which helps you get through a bad time?
I try to remember that pain isn't the worst thing that can happen - not living your life is the worst thing that can happen. However, that can be a difficult concept to remember when things are really bad. A friend of mine once shared a terrific proverb with me: "this too shall pass." It's a great reminder that even the worst things ebb, and are likely to be followed by better times. And when I'm in my very black humor space, I've been known to say that everything will be fine in the end and if things are not fine, then it's not the end_Thank you Lene for giving us a glimpse into your life and for sharing your hard earned wisdom of how to manage and cope with both a chronic medical illness and depression. You are an inspiration to me and to everyone who reads your posts. Visit to Lene and_ Health Central’s RA site to find out more.
We would love to hear from our members. Do any of you have RA or other type of chronic medical illness in addition to depression? How do you cope? Tell us your story. We are eager to hear from you.**