What to Do If Your Chronic Illness Is Taking a Toll on Your Mental Health

To start, be okay with not feeling okay.

July 23, 2024

Illustration of person with chronic illness trapped in a spiral

Maybe you were just diagnosed with an autoimmune disorder and are realizing how much your life is going to change. Or perhaps your new treatment plan involves a steroid that will finally reduce your pain in exchange for unpredictable panic attacks. Dealing with anxiety or depression because of a chronic illness is very common and often does more than just make you feel awful; it can also worsen the condition you have, triggering painful or otherwise debilitating flare-ups that can be really difficult (but not impossible!) to recover from.

“When you’re diagnosed with a chronic illness, you have to let go of a vision that you had for your life and embrace a new one. That doesn’t mean that your new life will be terrible, just different,” Jody Thomas, PhD, a clinical psychologist specializing in medical trauma and pain in Denver, tells SELF. “Sometimes it’s going to feel really frustrating, and that’s okay.”

Facing anxiety and depression head on isn’t easy for anyone, so be proud of the fact that you’re here and looking for new ways to cope, even if it feels like you’re fighting the odds. We asked therapists who specifically treat people with chronic illnesses about how you can realistically (and even joyfully!) care for your mental and physical health without jeopardizing one for the other. Here’s what they had to say.

1. Be okay with not feeling okay.

No good will come of ignoring any of your very reasonable emotions just to hop on the “I’m fine” bandwagon (IYKYK). “The more you pretend that it’s not a big deal, the more those feelings are going to make themselves apparent,” says Dr. Thomas, who has a connective tissue disorder called Ehlers Danlos Syndrome, as well as postural orthostatic tachycardia syndrome (better known as POTS). “Allow them to exist and know that they don’t have to dominate your existence.”

So if, for example, extreme fatigue forced you to miss your BFF’s birthday dinner and you’re super bummed, or you’re really sad about not being able to pursue your career with the same intensity you once did, acknowledge how shitty and unfair that is without beating yourself up for feeling that way.

2. Understand how your treatments may affect your mood.

Side effects from a lot of medications and life-saving procedures for chronic conditions can really put your mental health through the wringer—but the doctors that prescribe these treatments don’t always remember to tell you that. Some drugs that reduce seizures, for example, may increase risks of suicidal thoughts or behaviors, and proton pump inhibitors used to treat gastroesophageal reflux disease (GERD) may increase the risk of depression. Meanwhile, painful procedures like bone marrow biopsies or spinal taps can be pretty anxiety-inducing. So ask your medical provider directly how new medicines and treatments might affect your mood so you can plan accordingly, Michael Zarabi, PsyD, a psychologist in Florham Park, New Jersey, tells SELF. It also doesn’t hurt to check in with your support group or an illness-specific subreddit to hear what others’ experience has been like.

From there, come up with a plan: Maybe you have your parents babysit your kids the night before a chemotherapy infusion so you can wind down with a relaxing bath and get some extra hours of sleep, or plan to get takeout from your favorite restaurant after your dialysis treatment so you have something to look forward to. As you push through these tough side effects, don’t forget to “acknowledge that they’re temporary and difficult,” Dr. Zarabi says. “And in the meantime, tell yourself that in the end, [your treatment] will do wonders for your body.”

3. Join a support group for people who share your condition.

As much as your friends and family may try to be supportive (or not, because people can disappoint you sometimes), they may not be able to really understand what you’re going through. But research shows that connecting with others who are in the same boat can have an amazing effect on your quality of life because, well, they just get it.

“When everyone else is busy believing that they can live forever but you’re having to deal with an illness every day, it can feel unbelievably isolating and frustrating,” Dr. Thomas says. Support groups offer safe places “where you can have honest conversations about your experiences”—without feeling like a burden.

You can find support groups via social media or through your hospital or treatment center. Otherwise, try looking for nonprofits centered on your condition; a lot of them offer resources to connect with others like yourself.

4. Say ‘yes’ if you can, but tell people what you need.

Not to be dramatic, but interacting with others is literally medicine. Studies show that social support can sharpen your memory, make you happier, help you live longer, and so much more that some researchers have even suggested that doctors should prescribe “connection.” But to do so successfully as a person with a chronic illness, you have to tell people what you need, Dr. Thomas says.

So maybe when your pals propose a day trip to a winery, you let them know you can’t drink alcohol because of your meds and ask if they’d be up for a different activity that isn’t quite so alcohol-centric. Being more open can be intimidating, especially if you’ve been primed to believe your illness is an inconvenience to others, but you might be pleasantly surprised. Dr. Thomas says most people want to support and include you, but they just might not know how. They might be afraid to ask or worried they’ll sound intrusive or insensitive.

Another way to ensure your social calendar isn’t completely bare is to create your own pain, anxiety, and/or depression scale, Dr. Zarabi suggests. Write down what level of anxiety equals an eight, for example—maybe this feels like dizziness and shortness of breath to you—and then determine if that’s a level where you’d benefit from hanging with others or keeping to yourself. So the next time your neighbors invite you to a last-minute barbecue at their house, reference your scale to help you make a decision. Think you’re at a solid five? Ehhh, maybe it won’t hurt to push through it…but anything above a seven might warrant a restful night in.

5. Get outside, even if it’s just for a minute.

It can feel so good—necessary even—to marinate in a blanket burrito all day in a dark room when your spirits are low or you’re in physical pain. But go outside if you can, says Aarti Felder MA, LCPC, a clinical counselor who specializes in chronic illness and medical trauma in Chicago.

Smell the fresh mulch on the ground, observe squirrels hiding nuts in your neighbor’s potted plants, and feel the warmth of the sun and all that free serotonin that comes with it. And while you’re at it, try moving your body too, Felder tells SELF. Of course, physical activity can be really, really hard and in some cases dangerous to do when living with a chronic condition, so if you’re struggling to find options that feel good, ask your doctor for alternatives or request a referral to physical therapy if you don’t already have one.

6. Find a therapist who also has chronic illness.

You’re likely going to have feelings and questions about your well-being that, to be frank, a “healthy” person cannot fully understand. So meeting with a mental health care provider who also has a chronic illness can truly transform your therapy experience.

There’s value in being able to talk with someone who knows firsthand how scary and confusing it can be to have a truly life-threatening or even terminal illness. “There’s tremendous intimacy and closeness in that. A lot of my job is facilitating those conversations and giving a place for that fear to go rather than allowing it to be that boogeyman in the corner,” Dr. Thomas says. “That’s when the healing happens.”

Dr. Zarabi says he’s able to connect with his chronically ill patients on a deeper level when he shares his own experience with ulcerative colitis. A lot of people tend to have thoughts like, I’ll never get better, and, Why did this only happen to me? he says, so “I find that sharing what I’ve been through at the right times and making that connection can actually be quite impactful for patients.”

You can search for therapists with unique specialties and backgrounds on Psychology Today. There’s also a nonprofit called the Open Path Psychotherapy Collective that can connect you to specific professionals who offer discounted services between $40–$70 per session for members. (Access to the collective’s services costs a one-time fee of $65.)

7. Focus on what you can control.

No matter how hard you try, fighting the reality of your condition and how crappy it’s making you feel is counterproductive, Felder says. Instead, focus on what you can control, like finding a cute pill organizer to keep track of all your new meds or downloading some new-to-you podcasts to keep you entertained when you need some rest.

Finding things you actually can control when you’re chronically ill is easier said than done. But if you need some help, Felder recommends acceptance and commitment therapy, a type of psychotherapy that gives you skills to redirect your thoughts to the present and try to accept your feelings about any pain, grief, and disappointment without judgment.

“You have your illness,” Dr. Thomas says, “your illness doesn’t have you.”