22 Things People Don't Realize You're Doing Because You Have a Lot of Illnesses
If you live with multiple chronic illnesses, you may find yourself adopting certain routines or behaviors that help you manage your array of conditions, symptoms and side effects. Some things might be obvious, like taking your medication or scheduling several doctor appointments, but other habits are more subtle. A casual acquaintance may not recognize that your actions and decisions are all-too-often based upon what’s best for you and your health.
To better understand the ways in which people manage and respond to their health conditions, we asked our Mighty community to share things other people don’t realize they’re doing because they have a lot of illnesses. Maybe some of these will sound familiar to you, too.
Here’s what our community shared with us:
- “My concept of ‘busy’ is different than most people. No, I may not actually have a planned activity, but I’m busy recovering from something (say, from the work day, or a family party) or resting prior to something.” – Naomi B.
- “Not keeping in touch because I’m spending too much time focusing on coping, resting, and spending too much effort doing things that have to get done like feeding myself, and laundry.” – Windy D.
- “I avoid making plans too far into the future. I don’t know how I’m going to feel tomorrow let alone a month from now. I hate seeming like I’m flaky or not social but it’s too hard to know.” – Jolene D.
- “Carrying a large purse/tote with emergency hygiene items for multiple chronic illness needs.” – Catrice G.
- “Setting alarms and reminders for everything, or else I won’t remember to take my medication, go to appointments, watch a certain TV show even, or do anything.” – Leah H.S.
- “Every single action has been carefully planned. When making a decision, I consider my current symptoms, the effect of activity on my body, if I want to do other things that day and so much more. I have to plan everything from showering to painting to shopping, which most people don’t give a second thought.” – Kaitlin E.
- “Distracting myself from the pain and trying to not take more pain meds with things like watching TV, doing puzzles on my phone, hobbies I can do while sitting like writing and sewing, social media, etc. I focus in on them to get my mind out of my body.” – Sarah N.
- “Walk funny… Sometimes it’s because the circulation in my feet is awful and it feels like knives in my toes. Other times it’s my chronic pancreatitis causing pain that makes it impossible to stand up straight. Also there are times I need to hold my ribs when they hurt and do things one-handed that most people would do with both hands.” – Amanda M.
- “At work I always write down everything I have to do during the day. And, when I complete any task, I write ‘done.’ I have to do this because I will forget what needs to be done and – oh Lord! – what I have done…” – Antonina R.
- “Constant eating (more like picking). People assume I’m always hungry and snacking, to most observers I seem like a bottomless pit. People often tell me they don’t know how I ‘eat so much and stay so thin,’ and that they are ‘jealous’ I don’t have to diet or exercise. But they fail to realize they have never actually witnessed me eat any sort of meal… nothing larger than the palm of my hand. They don’t see that I run to the bathroom multiple times a day, that I sit in pain from that small snack I forced myself to eat. I’ve had gastroparesis and SMA syndrome for over five years now, and the only way I am able to keep my body weight ‘stable’ is to constantly consume the calories that my stomach doesn’t totally absorb or allow to pass through. People don’t see, or understand, what it is like to face a constant battle within yourself. Often, they are quick to judge.” – Breanne F.
- “Avoiding alcohol.” – Alma V.
- “Learn how each illness/symptom works in patterns/systems and what reacts on what. Multiple doctors and nurses have told me I have too much focus on illness. I actually do this to need less focus on illness in my daily life. More knowledge leads to better symptom management, that leads [to] less-needed focus on illness.” – Aili K.S.
- “Wear my hair down and not wear jewelry. A ponytail can make migraines worse and cause flare-ups from fibromyalgia to feel worse. Jewelry can feel heavy and cause neck pain or make my arms feel numb.” – Nikki E.
- “I carry a backpack to work so I can carry all the pills and emergency pain equipment I need in a day. I have anti-nausea pills, potions and tinctures. I carry braces just in case my right knee decides to be a brat. I use a cane not for the pain, but because my body weakness and pre-syncope sometimes causes me to stumble and fall into things.” – Shannon W.
- “Miss class, which actually makes college a lot harder, despite it looking like I’m just ‘too lazy’ to go to class. I have to have special accommodations through my university in order to keep up with my classes.” – Ryann R.
- “I keep a bullet journal so every moment of my life is written out and organized. Every symptom and flare written out so I can tell my doctor at appointments. Page after page of step-by-step plans on how to handle each issue that pops up, just in case I can’t communicate. The more structured and organized my bullet journal is, the better I feel like I can handle my illnesses.” – Elizabeth E.
- “Schedule two days of rest after any big event, because I know I will have trouble getting out of bed those days.” – Allison P.
- “Color coding my family calendar and putting just about everything on the calendar, including errands that need to be run and time to rest. I have multiple debilitating illnesses and five children with challenges of their own. My illness-related memory issues make keeping track of my medical appointments, my children’s medical appointments, homeschool activities, church activities, etc. a challenge.” – Amanda T.S.
- “Standing. If I sit, I might need help standing up, and that is embarrassing for a 33-year-old.” – Ashley S.G.
- “Sleeping a lot – I’ve had many people, even health professionals, say they wish they could sleep as much as I do because it must be nice. It’s not. I’d rather have seven or eight hours sleep and feel refreshed rather than needing 10+ hours sleep and still being too exhausted to do anything with my day.” – Leah H.S.
- “Calling off work because my body is so tired and exhausted that I can’t manage to get out of bed. I’m not lazy, I’m just very ill and this is relatively new to me.” – Kirsten R.
- “I cry a lot on a regular basis. It’s my way of coping with everything, so instead of breathing exercises or coloring or counting or listening to music to calm down, I cry for a good 10 to 15 minutes, then boss up.” – Samantha J.