12 Ways Anxiety Manifests for People With Chronic Illness
Chronic illness is not always just about your physical health. It can be overwhelming, draining and have a major impact on your mental health. If living with chronic illness makes you especially anxious, know you’re not alone. Research — and patient experiences — suggest anxiety is not an uncommon thing if you live with chronic illness.
“As humans, we are hardwired for survival down to our biology,” Corie D. Houlbjerg, Psy.D., a psychologist who specializes in helping people with chronic illnesses in Dallas, Texas, told The Mighty. “Any perceived threat to our survival can set off the alarms of anxiety, leaving us feeling the urgency to figure out how to dismantle the threat.”
And when you live with chronic illness, those survival alarms might go off a lot.
According to Houlbjerg, multiple aspects of chronic illness cause anxiety. These reasons could include worrying about your current life and your future, lifestyle changes, not understanding your full prognosis, waiting for lab results, concerns about fluctuating symptoms, and all the unknowns that come with a chronic illness. How you experience these anxieties in your everyday life can be pretty individual and may range from irritability and anger to panic and avoidance.
Since everyone expresses their anxieties about chronic illness in slightly different ways, we turned to our Mighty community. We learned how common anxiety is among those living with a chronic illness to show you that no matter how your anxiety shows up, you are not alone.
Here’s what our community had to say:
My anxiety manifests by…
1. Dreading going to the doctor.
“I cry when I have a doctor’s appointment. I beg my wife to cancel the appointment as I don’t want to deal with the judgement, or feel like a guinea pig or hear the dreaded words of the doctors saying they don’t know why I am sick. Doctor appointments are the hardest for me.” – Acadia M.
“I lick my lips a lot, need to pee more often, have numbness/tingling in my arms, legs and face, and have difficulty breathing. Any time I hear medical stuff, I get anxious. I panic before doctor’s visits now too. It’s horrible. I just want answers and to get better.” – Misty L.
2. Doubting myself frequently.
“For me, my anxiety is a self-fulfilling prophecy. If I don’t feel well, anxiety kicks in and I think, ‘what if I pass out?’ More often than not, the anxiety itself is enough to actually make it happen.” – Jenn R.
3. Keeping an emergency bag on-hand.
“I have a lot of anxiety about what could go wrong when I leave my house, so I carry a ‘go bag’ that includes anything I may need to combat what could go wrong. [I carry things like] pain meds, CBD oil, essential oils, etc.” – Juli L.
4. Avoiding crowds.
“Crowds [cause anxiety]. What if they get too near my back or walking stick? What if I can’t get away? I went to something at my daughter’s school and while the other parents in the busy classroom were looking at how they do math, I had a fixed smile and was inwardly trying not to scream and scream.” – Gabbie J.
5. Pushing myself to make up for ‘lost time.’
“Completion compulsion causes me a lot of problems. When I do feel well, I overdo it by trying to make up lost time and end up causing myself more pain for several days.” – Maggie S.
6. Having a reaction to medical terminology.
“I was trying to help tutor a kid with science. I had a panic attack hearing about different physical disorders. Something about being sick has made it so I am so much more sensitive to stuff like that. I can’t even watch medical TV dramas.” – Stephanie S.
7. Needing to keep things clean.
“When everything you do is a struggle like showering, cooking and cleaning, your anxiety levels can skyrocket when someone has made a mess after you have already cleaned. ‘That just took the last drop of energy I had, damn it!’ And when someone doesn’t care and says you’re over reacting? That makes me even more [anxious]! I can’t sit in a cluttered room. I can’t relax in a dirty house. My anxiety shoots through the rooftop.” – KellyAnn E.
“Pain makes me angry at times around people, especially with cleaning. Leave the area if you’re not helping.” – Mary W.
8. Avoiding social interaction.
“I don’t really have any proper friendships because socializing is too hard at this point. It started out with staying home because of pain and fatigue, and then the lack of socializing triggered crippling anxiety to the point where I can’t keep the very few plans I do make.” – Brittany R.
“Because of pain I went out less and less. Eventually that turned into anxiety about going out and anxiety while being out.” – Melanie C.
9. Fearing flare-ups.
“Many times, I’ve felt like I’m waiting for something to go wrong. I also get panic attacks when I least expect it and constantly worry that what I’m doing will send me into a flare.” – Patricia G.
“I worry about going places and having a flare while being out. It happened when I was a teenager and it was so traumatic that it still affects me over 10 years later. I’m constantly trying to balance the risk of symptoms with the reward of happy experiences.” – @chaostheory
10. Constantly feeling distracted.
“My anxiety shows when I’m not listening to others well. My mind is wandering about what I am supposed to remember to do that I have forgotten and there is usually a lot of things that need to get done. So, I am not hearing someone talk to me and this is embarrassing and shows up as rudeness.” – @thanksb2god
11. Not wanting to be touched.
“I have a liver condition that causes pruritus (chronic itching) and when it flares up, my anxiety gets really bad. I try to avoid wearing tight clothing and staying away from fans and vents. I flinch away when people touch me as sometimes, a simple touch makes my skin flare up and I can’t stop scratching. It’s the worst part of any of my conditions.” – Chantel S.
“I catch myself constantly apologizing to my peers, friends and family for not being as functional as they’d like. I also scare myself into thinking they don’t understand and think I’m faking it. I also give disclaimers for everything. ‘The house is a mess.’ ‘The food might not taste good.’ It’s a terrible experience that can cause you to isolate yourself if you don’t keep fighting it.” – @cinderella2019
If you are struggling with anxiety due to your chronic illness, there are resources out there that may help. Houlbjerg suggested talking with your doctors to help answer your anxiety-provoking questions about your condition, treatments and what you can expect from your symptoms. In addition, Houlbjerg recommended working with a therapist, who can help you navigate the ways your life changes with a chronic illness diagnosis and learn new coping skills to manage stress and anxiety. She also suggested finding a support group or community of others who have been there.
“One of the challenging things about chronic illness is that by definition, the condition is most often here to stay,” Houlbjerg said. “A therapist and a support group can provide help and encouragement for adjusting to the changes that a persistent condition will bring while not losing sight of one’s identity, values and purpose that expand far beyond their medical concerns.”
For more stories about the relationship between chronic illness and anxiety, check out these Mighty articles: