When you live with a chronic illness, bad days are more than just a case of the Mondays, or your bagel landing butter down. On the days that really suck there is little to relieve the pain, fatigue, and impossible barriers that start to stack up.
But what do you do about it? We asked members of our community to share their advice for getting through the tough times. Whether it was lupus, CRPS, ankylosing spondylitis, or another condition, many of the answers were similar.
Here’s what people with chronic illnesses keep in their bad day toolkits:
1. Find ways to treat yourself.
Don’t wait for your next day off, a vacation, or the perfect time to relax. Find small ways to treat yourself every day and remind yourself that you deserve to enjoy life even while tackling a chronic condition.
“Have a small not too hurtful vice. Mine is Dr. Pepper.” – Jackie, Lupus
“I try lots of prayer, podcasts, baking, reading, walking my dog Chachi, watching the sunset, listening to music, visiting with friends…buying makeup or a new outfit. Sometimes a good cup of coffee and chocolate can really brighten my day.” – Kristin Marie, Lupus
“Watching shows online and spending time with my cats really helps. I also enjoy the simple things, like my favorite foods and drinks every once in a while.” – Hannah, Lupus
2. Take a cat nap.
Sleep is essential to health, but it’s easy to not get enough when you’re stressed or battling the pain and discomfort that comes with a chronic condition. Consider giving yourself more time to rest throughout the day. Naps can help you avoid burn out, make you more productive, or even help with your condition. If you can’t sleep during the day, spend time doing restful activities you enjoy – your body may thank you.
“Rest. Keep busy by reading, watching movies, or listening to music. Think of things or people who make you smile. Look at pictures of good times.” – Judy, Lupus
“Sleep. There are days where I just don’t get out of bed, period.“ – Jeannine, Lupus
3. Get creative.
It’s easy to fall into a routine especially when a set schedule helps you manage your condition better. However, that doesn’t mean you can’t break out of your comfort zone every once in a while. What’s something new you’d like to try? Could you think about the situation differently? We love how Alyssa put it:
“There are many things that help me get through bad days, as no two bad days are identical. One day it might be binge watching a TV show. Another it might be forcing myself to FaceTime an empathetic friend. Sometimes it’s sleeping or small acts of self-care.
Almost every time it requires taking a moment to remember that I’ve survived many other bad days, and they were followed by good days. This bad day is no different. I just need to do what I can to get through it (which can include crying or getting angry), and try to acknowledge as much as possible that when it’s over I’ll never have to live that exact day again.
There is always the promise of a new day, even during a bad day. A hard season does not mean all future seasons will be hard, even if it feels like it will be. I take comfort in the fact I’m not clairvoyant. The good days could start tomorrow.”
4. Be your own best health advocate.
When it comes to your health, try becoming an active patient. This means learning about your condition, preparing for appointments with a list of questions, speaking up for yourself, and communicating your needs and concerns. Research shows that active patients, “fare better — in satisfaction and in how well treatments work.”
“Fight to find the right doctor and the right treatment. You know your body better than a doctor who has just met you. You have got to fight for yourself, even when it’s hard.” – Hannah, Lupus
“Do not give up on yourself. Know that you are still valuable and able to contribute to life; even small things can mean a lot. Try something new even if it scares you. Never stop trying.” – Kristin Marie, Lupus
5. Keep a PMA (positive mental attitude).
We know, we know…being told to say positive is just annoying! However, when we asked people with chronic conditions how they get through the tough times this was their #1 tip. That said, they didn’t suggest ignoring the bad and only focusing on the good. Instead, they highlighted ways to embrace the suckiness and move on with life anyway.
“My son and I call it the ‘10 second rule.’ The bad days, weeks, months, we take 10 seconds at a time.” – Joanna, CRPS
“A friend taught me a quote: ‘this too shall pass.’ I try to remember this during the rough times.” – Jo, CRPS
“My survival rate so far for bad days is 100%. I tell myself I can keep going” – Amanda, Ankylosing Spondylitis
“When I get hit with something I absolutely cannot do, I try to think about what I still can do.” – Anonymous, Ankylosing Spondylitis
6. Raise awareness about your condition and share your story.
At Health Stories Project it’s our mission to help you share your story, so we would be remiss if we didn’t highlight this common suggestion. Whether it’s starting your own blog, completing surveys, participating in a clinical trial, or attending a virtual focus group, sharing your story can have a big impact on your life and help pull you out of hard moments. Plus, you could make a difference in someone else’s life too!
“I engage others in conversations about health and have conversations about type 2 diabetes. There are very few [type 2] bloggers out there.” – William, Diabetes
“I have done so much to raise awareness. When I’m having a hard moment I just go back through comments people have left on my blog posts thanking me for giving our community a voice.” – Charis, Ankylosing Spondylitis
7. Reach out to others.
Building up a network of people who care, and staying connected with them, can help combat the feelings of depression and loneliness that come with many chronic conditions. Whether it’s a best friend, an online support group, or a weekly meeting, your investment in people will pay dividends.
“I mostly talk with my best friend whom I met through a CRPS support group. We call each other our professional pep talkers.” – Samantha, CRPS
“My children get me through the bad days. They are a constant source of amusement and give me permission to rest whenever I try to push too hard.” – Eva, Lupus
“Without my wife and daughter, I am certain that I would not survive CRPS. I remind myself daily of how much they mean to me, how lucky I am to have their love and support, and how much they need me too.” – Leigh, CRPS
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8. Remember, you’re strong.
Being human means going through countless ups and downs. Having a chronic condition usually means more downs than ups which can lead to feelings of loneliness, depression, and even low self-esteem. But being sad isn’t always bad, feeling lonely isn’t pathetic, and low self-esteem can be temporary. Every day you live with a chronic condition you are growing stronger, wiser, and more bad-ass than you know.
“Have faith in your strength. You are a fighter and you can do this.” – Anonymous, Lupus
“I try to remind myself how strong I am. Through the years I have been able to reflect on my life and realize that having [Ankylosing Spondylitis] has shaped me into a better person. Despite the challenges and negative factors that come along with it, I have been able to see through that. I notice that I have become more understanding, open-minded, and appreciative towards others and life. I look at life a little differently than others, and I have had to mature differently than others. I believe that makes me unique.” – Natalie, Ankylosing Spondylitis