29 'Habits' of People With Invisible Illness

Unless you’ve experienced it yourself, it can be nearly impossible to understand what someone with a chronic, invisible illness goes through on a daily basis. Not only can the physical symptoms be painful and exhausting, but they can take a toll on your mental and emotional health as well. Guilt, anger, depression and isolation all too often accompany fighting a daily battle not many others can “see.”

In response to the physical and emotional aspects of living with an invisible illness, many people tend to develop certain “habits” or behaviors that help them manage their condition and its effects. We asked our Mighty community to share the “habits” they’ve developed – good or bad – from living with invisible illness. Maybe some of the following will sound familiar to you, too. Let us know how you cope with illness in the comments below.

Here’s what the community shared with us: 

1. “I over-explain when asked about my health, and consequently my weight. I also avoid social situations, out of sheer exhaustion, preferring online socializing instead.”

2. “I always look for a chair when I’m out, as standing up for too long exhausts me. I carry water with me everywhere, as I get dehydrated easily.”

3. “Saying ‘no’ to almost everything. It’s much easier to change to a ‘yes’ later than having to backpedal to a ‘no’ later. This was a hard thing to learn because I want to do all sorts of things, but I recognize I am limited by my illnesses.”

4. “Not exercising – ever. Even though I know it would help me, I’m too busy ‘saving up my spoons‘ to consider throwing them away at the gym or even on a walk around the block.”

5. “I have a terrible habit of not finishing tasks. I get halfway done and I stop to take a break with the intention of going back and I just never do. It really annoys my husband.”

6. “I live with music constantly playing through an earphone. By keeping the music playing it helps me filter other sounds and feelings. It stops over-stimulation. It lets me feel calmer in situations that cause me stress above my pain level.”

7. “Each morning before I get out of bed, I lay there taking stock of my physical aches and pains. Reach for my topical pain relief and rub it in. A few stretches and then I get up (usually limping) and start my day.”

8. “I constantly apologize even if I haven’t done anything. I guess part of me hopes if I apologize enough, it will make up for my not being able to do as much as someone else my age.”

9. “I journal everything from what I ate at what time to when I started getting a headache then when it got unbearable and if I left the house and for how long so I can look back and see if there are patterns that caused flare-ups and keep track of what treatments have caused side effects and which ones have helped.”

10. “I avoid scheduling and going to regular self-maintenance appointments such as the dentist and the eye doctor because I’m so overwhelmed with all of my other health and medical stuff going on.”

 

11. “I smile a lot. I once got hit in the face with a soccer ball during practice, and I kept smiling with tears running down my face to let everyone know I was OK. I would rather [struggle] in silence than for someone to worry about me so I developed a great smile to distract and deceive them. My eyes give it away though. I can’t always hide the exhaustion in my eyes.”

12. “Stashing medicine (and usually snacks) everywhere I might need it. There’s even a bottle of ibuprofen stuffed between the cushions of my couch.”

13. “Multitasking – my chronic illness drains my energy, so when I have a flare-up or a bad day, I’ve learned to do as many things as I can to make my bad days a little easier.”

14. “I don’t eat dinner. If I eat too late in the day, then I don’t sleep well with the pain. I have battled severe Crohn’s disease most of my life. Every meal is carefully considered and every meal is a potential pain bomb.”

15. “I pop my neck, back, knees, elbows, fingers constantly, because it helps ease the pain.”

16. “I make excuses as to why I can’t stick with plans or go to functions when I’m not feeling well instead of just telling them the truth, that I’m having a bad day, because I don’t want to become ‘that’ conversation.”

17. “There are little things, like carrying my phone and water bottle literally everywhere with me. There are bigger things, like habitually secluding myself when my anxiety and self-disdain start to take over my mind, and often it will spiral and worsen because I feel too scared and ashamed of myself to reach out for help.”

18. “My first reaction to a vacation or upcoming trip is to think of every possible way my chronic illness could ruin it (sometimes it does), but I know the self-fulfilling prophecy doesn’t help.”

19. “Allowing my independence to become vulnerable and letting my husband care for me, like helping bathe me in the shower because my skin hurts just with the water, my body hurts to stand in the shower and I am so very fatigued, I do not have the energy to stand up. It is quite humbling, but he shows me every day he is there for me whatever the struggle may be.”

20. “I seclude myself. I keep a lot of my emotions to myself and don’t really partake in much [out of] the fear of causing a flare.”

21. “Due to brain fog or fatigue, I second-guess myself often. Was that right? Did I say that right? Did I say the right things? I used to be so quick on my feet when it came to conversation and now I feel like I’m always two steps behind. Because of this, I try to be more aware and listen more before I speak. I try harder to be more thoughtful and less quick to judge something.”

22. “Having to overshare about my condition to have it taken seriously. I have endometriosis which causes debilitating abdominal pain and cysts, but unless I go in depth about my condition most people will just assume I have period cramps.”

23. “I apologize constantly, often for things I know aren’t my fault and I know I can’t control.”

24. “It’s becoming easier to say ‘no’ when I simply don’t have the energy to attend a dinner, do a task, etc. When I was first diagnosed with fibromyalgia, I thought I could just push through the pain and fatigue and not let anyone know how poorly I felt. This was dishonest not only to others, but to myself. I’ve discovered how crucial self-care is, whether that means a nap if I need one, taking daily supplements and vitamins or politely declining an invitation to dinner. On the flip side, I take advantage of those days when I feel better, but keep in mind not to overdo it or I will pay for it later.”

25. “Not cooking at the end of the day because I just hurt too bad, even though we can’t afford to eat out. I eat so much pizza it is ridiculous because that’s all that delivers.”

26. “When I’m out at a social gathering, I flit from person to person and group to group. This has given me a social butterfly persona. In truth, if I stop moving or sit, I may be unable to get back up or even have to go home. My muscles tighten up and I can’t move properly. Once I sit down, I’m finished.”

27. “Attitude checks. I will allow myself a pity party when it’s deserved, but only for a short time, then it’s time to check my attitude because it is only by way of ‘one step in front of the other’ will I get to where I want and need to be. I have to be as positive as I can not only for myself, but also my family. A good outlook is how I make it through each day.”

28. “Defending everything I do. It’s a terrible thing to do. If I’m walking with my cane, I defend it. If I park in [disability] parking, I defend it. If I sleep during the day and stay up at night, I defend it. It’s a habit I want to break, but I’m too afraid to.”

29. “Seeing the value in every single day. Cherishing every opportunity that comes my way. Being motivated to do so much because I know I could lose more function any time. Not seeing people as they appear… respecting that anybody could be going through a challenge, so showing respect and kindness to everyone, even if they aren’t kind to me. Recognizing it may just be a bad day or something unknown they are battling.”