One of the biggest reasons I have this tattoo on my wrist is to remind me to believe in many things – that remission is possible, that I’m worth the effort of self-care and self-love, that I’m enough… and that this pain we go through is worth it.
When things are their worst, it isn’t always possible to remember that.
Recently RA Guy and the great people over at Joint Decisions put on a webinar about mental health and arthritis. Several things stuck with me, especially the fact that you’re twice as likely to have depression when you have RA as someone who is normal.
The stages of grief – denial, anger, bargaining, depression, acceptance – are things that those with chronic illness tend to experience in a cyclical rather than linear manner. Maybe today I’m angry about being sick and tomorrow I’m fine with it and the next day I bargain with an unseen Arthur to knock it off.
RA Guy talked about things that he’s found helpful like humor, breaking down tasks, asking for help and being open to accepting it, positive or motivational thinking, etc. The biggest thing that he touched on that really resonated with me was to allow yourself to process and feel. I think we often try to ignore the sadness or other emotions (like in Inside Out) to be happy all the time.
When the shit hits the fan, we really need to work on savoring the good we experience, connecting with resources, practicing self-compassion/love/care, and, perhaps most importantly, advocating for ourselves. It’s easy to let others make decisions, especially about your care, if you’re depressed or dealing with some tough subjects. Just don’t forget to add in your voice and speak up for what you want. It can help you feel better about yourself.
Another thing that was good to be reminded of is how important our emotional and mental health is. These things are just as important as physical health, so please remember to take time and address issues you have in all areas.
A few times, RA Guy and the doctors on the webinar remembered to hammer home the idea that you have to feel comfortable bringing up these issues with your doctor. If you don’t, you have to figure out how to get to that point, even if it means changing your health care team members. You have to be able to be open with all your providers and make sure they know about your health issues, physical or mental.
Other tips from this webinar were to be adaptable, write or blog, practice mindfulness, remember you can’t change others, get realistic with your daily goals, and to become educated about your disease.
These changes won’t make things perfect. Life still might suck a lot. But a change in how you handle yourself, no matter how small, can really help and have an effect on many other parts of your life. As RA Guy said, “I’m prepared to deal with how I’ll feel tomorrow.” Maybe that’ll mean you feel like crap physically or mentally – but if that happens, you can open up your toolbox full of tips.
On a more personal note, I want to share a story about my struggle with mental health issues.
Depression isn’t the same as being sad, but is more the absence of happiness and enjoyment. It’s when things that you love and enjoy and are passionate about no longer bring you joy. You think irrationally, only realizing it if you have to explain things to someone else.
Three years ago I was *finally* diagnosed with fibromyalgia, though I’d likely been dealing with it for most of my life. I had recently started seeing a therapist after having to call a hotline because I was on the brink of self-harm or worse. I was missing more and more work as a result of my pain and was on the brink of losing my job and, this combined with continued emotional abuse from my mother, other illness issues, and having to stop graduate school… I became very depressed, both from the pain and the feeling of not being in control of my life and my destiny. More than once, I thought about crashing T’s car into a pole or something. If I didn’t die, I’d wind up in the hospital and at least get some relief from pain medications. I look back on that time now and wish that I had spoken up or made changes sooner.
For the first time in a long time, my pain from my SJIA and my fibro are both, mostly, under control. It took me three years, trial and error with different medications, and making major changes in my life to get to now – literally.
If you know someone who struggles with depression know that, while you can’t directly help their illness, you can be supportive of that amazing person. One of the things that has helped me the most is knowing that T and I have similar struggles with our mental health. Because of that, he and I are very good at helping each other, which can be as simple as snuggling or as involved as calling the other’s therapist to warn them when things aren’t going well.
Regardless of whatever else you do today, give someone a hug. Tell someone you care about them or love them. Ask how they’re doing, not as a formality but because you really want to know the answer.
You know where else you can find more talk on mental health with chronic illness? At MedX! I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.
