When you’re dealing with a chronic inflammatory disease like rheumatoid arthritis (RA), psoriatic arthritis (PsA), lupus, fibromyalgia, chronic migraine or psoriasis, there’s a lot about life that can be unpredictable — especially if your disease isn’t well managed. Symptoms like pain, stiffness and soreness, fatigue, sleep disturbances, brain fog, and skin plaques can vary from day to day, not only throwing a wrench in plans but undermining your confidence and your ability to feel productive at work and find joy in your relationships. And sometimes the side effects of treatments themselves can make you feel drained.
Factor in high rates of depression for people living with chronic illness — for example, it affects as many as 42 percent of patients with RA, as many as 60 percent of people with lupus, up to 64 percent of people with fibromyalgia and up to 80 percent of people with chronic migraine — and the struggle can be very real indeed.
Elizabeth Arant, 40, of Scottsdale, AZ, who lives with chronic migraine, intercranial hypertension, and a painful spine condition called arachnoiditis, says, “When things get worse, my depression gets worse.”
For Eileen Davidson, 36, of Vancouver, an RA diagnosis deepened her depression. “I had suicidal thoughts every day,” she remembers. “I was constantly overwhelmed and didn’t know how to make things better. Everything got worse with the RA — tasks became physically painful and exhausting too.”
Angie Ebba, 41, who lives with a number of disabilities, including ankylosing spondylitis, fibromyalgia, chronic migraine, and PTSD, says that depression had turned her world into shades of gray.
Why Managing Your Depression Matters
It isn’t always easy to manage depression on top of a chronic illness. For one, you may not even recognize it as a separate illness. “The symptoms of clinical depression may overlap with that of a chronic illness,” explains Shannon Garcia, LCSW, a psychotherapist in private practice in Illinois and Wisconsin. “Loss of energy, changes in weight, difficulty concentrating, and decreased appetite may all be things you experience when managing chronic illness.”
And even those who do recognize they have depression may direct their energies elsewhere. “It seems like a lot of people search for answers for their chronic pain and don’t address their mental health,” says Erin Knauer, MSW, LISW, a Des Moines, IA-based therapist who specializes in chronic pain.
That’s unfortunate, since treating depression can ease pain, help you think more clearly, boost mood, increase energy and make almost everything a little bit easier. “If you treat your depression, most people see a decline in the level of pain and an overall improvement,” says Knauer. One of her clients, who was depressed and anxious that her chronic pain would prevent her from returning to work, started weekly therapy, began taking antidepressant medication, and took an extended vacation. Soon everything turned around. “She’s back at her job, and she walks during our virtual session each week, so she’s getting her exercise while attending to her mental health,” says Knauer.
8 Tips for Coping with Depression and Chronic Illness
Elizabeth, Eileen, and Angie are also benefiting from co-managing their depression and chronic illnesses. Here, they share the strategies that are helping them feel their best.
Keep your care team in the loop
As someone with a chronic illness and depression, you likely have multiple health care providers. Elizabeth has found it helpful to keep them abreast of her mental health concerns as she would any other health issue. “When I’m in the hospital or after a surgery, my depression gets worse, so I make sure my primary care provider is aware of what’s going on, not just my psychiatrist,” says Elizabeth.
Communicate — your way
For Elizabeth that means writing via her patient portal. “I feel like I have more control to really let my providers know how I’m feeling. Sometimes in appointments I still get nervous, but writing things down gives me a chance to review what I’m saying and make sure I’m getting everything down without emotion in a straightforward way.” You might prefer to speak with your provider in person or virtually. Tune into what works for you.
Be an advocate in the community
“When I think of what really has helped my depression and [helped me] get through a lot of the self-hatred, it is honestly volunteering and meeting other people like me and doing things in my community,” says Eileen, who writes grant proposals, plans fundraisers and created a social hour at her local arthritis clinic, among other achievements. As someone who used to feel stigmatized by having a mental health disease, she’s come a long way: “I was so terrified about speaking up. I would get drenched in sweat and would forget what I was saying. I was so nervous and scared that people would think ‘This girl needs to be locked up.’ Then I realized a lot of people also relate to what I have to say. Everybody has their own struggles in life.”
Reach out for help
“Both chronic illness and mental health are difficult to navigate, but navigating them both at the same time can be extra hard,” says Angie.
This is why it’s important to ask for help, says Knauer: “Maybe you need someone to run an errand or help clean the house. It’s about finding the middle ground: What can I do versus what can I ask people to help with? What people don’t always remember is that people want to help each other. We all have the drive to help…we just don’t know what that person needs.”
Find healthy distractions
“When my pain is bad and my depression is bad, I set a small goal like taking my dog, Birdie, for a walk,” says Elizabeth.
Eileen enjoys going for a swim, relaxing in the sauna, or watching Forensic Files. “I do lots of gardening. I paint. I focus on what I can do instead of what I can’t do,” she says.
Adds Angie: “On a bad pain day, making cat videos could be a good coping skill. I find having a list I can refer to, even if it’s just on my phone, helps when I’m in a depressive episode to not have to think of things to do.”
Enhance your sleep
“Everything is amplified if you don’t sleep,” notes Knauer, who suggests trying brown noise, progressive muscle relaxation, box breathing, and no TV or phone in bed, for at least one week to see if it helps.
For Eileen, one of the main ways her antidepressant has helped her is by improving her sleep. “I don’t have many racing thoughts at night. Better sleep helps me with the day overall; it calms my depression and anxiety.”
Make the most of therapy sessions
“Doing journaling and my own introspective work between therapy sessions has been helpful because then I’m prepared with things to talk about and have more insight into myself prior to a session,” says Angie. “I’ve found it’s also really helpful to find a therapist with a good understanding of chronic illness so they know not to treat me or suggest the same things they would to an able-bodied person.” After one particular difficult hospitalization, Elizabeth benefited from sessions with a pain psychologist, who specializes in treating people with chronic pain.
“With antidepressants, it’s such a trial-and-error process not only to find the right medication, but to find the right dose and the right schedule,” says Elizabeth, a nurse who also has a master’s degree in nursing education and does advocacy work for the National Headache Foundation. “It could be a six-week process. And if you’re having side effects, let your provider know; you don’t have to live with them.”
The benefits of finding the right treatment are worth it: “I’d always known depression impacted me, but it wasn’t until I was receiving treatment that I realized just how much. “When I started medication,” says Angie, “it was almost like the world regained its color after many years of being shades of gray.”
Be a More Proactive Patient with ArthritisPower
Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.
Galvez-Sánchez, CM, et al. Psychological impact of fibromyalgia: current perspectives. Psychology Research and Behavior Management. 2019. doi: https://doi.org/10.2147/PRBM.S178240.
Holmes, A, et al. “Depression and Chronic Pain.” Medical Journal of Australia. October 2013. doi: https://doi.org/10.5694/mja12.10589.
Jahangir, S, et al. “Is There an Association Between Migraine and Major Depressive Disorder? A Narrative Review.” Cureus. June 10, 2020. doi: https://doi.org/10.7759/cureus.8551.
Lupus and depression: Know the signs and how to get help. July 9, 2013. https://www.lupus.org/resources/lupus-and-depression-know-the-signs-and-how-to-get-help.
Taylor-Gjevre, R, et al. “Assessment of Sleep Health in Patients with Rheumatic Disease.” International Journal of Clinical Rheumatology. April 2011. doi: https://doi.org/10.2217/ijr.11.6.