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18 Hidden Parts of Chronic Illness You Don't Usually See

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Unless you have a chronic illness yourself, it’s not really possible to fully understand what it’s like to live with one. But even if you know someone with a chronic illness and have gotten plenty of glimpses into what it’s like to live with their condition, chances are, you’re probably not getting the full picture.

Everyone with chronic illness is different, and some may choose to be more open about their health than others. Maybe you don’t keep anything a secret, and that’s totally OK! But for many, there are a number of aspects of life with chronic illness that can be difficult or even a bit embarrassing to talk about, so you tend to hide certain parts of your life.

A person with chronic illness may keep parts of their life hidden for a variety of reasons, and while no one should have to hide things, it’s important to remember that not everyone feels comfortable being open about everything. Just because you don’t “see” a certain aspect of a person’s life does not mean it isn’t there.

We wanted to raise awareness of the parts of chronic warriors’ lives that may often be hidden and unrecognized, so we asked our Mighty community to share an aspect of their life with chronic illness they keep hidden. If you have a loved one with chronic illness in your life, remember that there may be more to their struggle than what you see. Your compassion and support can go a long way.

Here’s what our community shared with us:

1. Taking Medications

I often keep my medications/supplements/rescue meds hidden from others. I am not even 30 years old, and have been fighting for my life through chronic illness of all sorts since I was 10 years old. I suppose, deep down, I try my best to avoid the judgment — being ‘so young’ and ‘in the prime of life’ people often don’t understand that someone so young can have such an expansive arsenal of illnesses and a corresponding plethora of medications just to keep my head above water.” – Kelsey L.

My entire life is needles. Most of my drugs are injectables or infusions. No one likes seeing needles or tubes or medical devices that are attached to me 24/7 so I keep them hidden.” – Cat L.

2. Effects on Bladder/Bowel Function

I have chronic pain and fatigue from injuries sustained in a car accident. What I often don’t tell people is how it affects my bladder, bowel and sexual function. No 30-year-old should have to manually remove stools because your body can’t do it itself anymore. It’s too embarrassing to tell people who aren’t in my medical team.” – Ash L.

For me, it would be my struggle with constipation. No one likes to talk about that but for me it’s a daily struggle, literally! I take laxatives and stool softeners daily and most of the time I still don’t empty even half of what I should. I hate having to tell people, ‘I can’t because I’m constipated.’ They’ll never know to what extent I mean. I withdraw from my social life when this happens until I get a bit of relief.” – Angela B.

I keep hidden how much time I really spend in the bathroom on my bad flare-up days. I wish people would understand that it’s exhausting and truly hinders me to be ‘normal’ on those days. I feel judged whenever I actually try and talk to someone I thought I could confide in, so I usually just keep it from everyone.” – Ashlee A.

3. Loneliness and Isolation

The incredible loneliness I feel daily is sometimes just as crushing as the pain. It sucks because I love people and helping others whenever possible.” – Tiffany P.

The extreme loneliness. I often feel abandoned or left out because I can’t do things others can. I’ve lost friends because they found it a pain to accommodate me when I have to take rest breaks, or if I am not able to party like others in their 20s. It can also feel lonely when family members continually have family outings that I can’t be included in because of my illness. Even though it may not be intentional, it would be nice to be considered more.” – Emily B.

The loneliness of not having anyone that really understands. Even though people try to support me, they still don’t really know and don’t want to know.” – Cassandra G.

4. Needing to Calculate Every Movement

How I calculate each and every movement I am about to make to see if I have the pain level and energy level needed. This includes what it takes to prepare for and attend large events, and includes minute things such as heating up soup for my dinner. I also have to calculate if doing this activity drains away too much for me to later do that activity. It’s constantly calculating with a completely different form of physical and emotional math I have yet to see taught in school.” – Sarah N.

People don’t understand the amount of energy that goes into preparing to leave the house or go to a big event. You have to calculate your every move to ensure you don’t overdo it. Even still, you could have an awful flare-up. I’m sensitive to heat and can’t walk or stand for long periods of time, so I have to take that into consideration when attending summer events.” – Kia G.

5. Cognitive Effects

How much my illness affects my mind! I am constantly terrified of sounding ‘stupid’ or not understanding the simplest of conversations. It’s turned me into a hermit, and most people don’t know that is why I’m so closed off now.” – Amanda L.E.

Immense fatigue and brain fog.” – Elisha C.D.

The extreme fatigue, the brain fog… I know what I want to say but it comes out all wrong. So I look ‘stupid’ most of the time.” – Jeanette G.G.

6. Depression

How depressing it is. There are days where I’ll try to do something I love just to find out it’s yet another activity my body won’t let me do anymore. I feel like I’m watching my body quit on me one day after another. That’s depressing.” – Megan D.

I usually hide the depression and pain…” – Don R.

The depression. I’m afraid people will think I’m throwing myself a pity party if I even begin to complain about my problems and how isolated I feel. Or knowing I’m limited or incapable of participating in something I love because of my health. So instead, when I’m feeling down, I hold it back until I go to bed. There are very few people who know how much my health affects me emotionally, to the point where I feel numb with a lack of care for anything.” – Amber B.

7. Fear

How scared I am. I am afraid of making the wrong choice. I am rare and me and my team are making it up as we go along. I always think, what if all I did was make the pain worse? I put on a brave face but I am not as brave as everyone thinks I am.” – Susan D.

How much fear and anxiety I live with. I feel like I’m always waiting for the next shoe to drop. And the fear that I’m going to miss something I’m really looking forward to.” – Addyson M.

8. Breaking Down When Everything Feels Like “Too Much”

They don’t see me crying when the pain’s too much or I’m frustrated about what I can’t do and how much my life has changed because of illness. It can be depressing.” – Rebecca G.

How often I break down because I can’t do things I used to do without pain.” – Sarah S.

Breakdowns because mentally I can’t deal with it.” – Kelsey P.L.

9. Insecurities

The insecurities. Others don’t know how insecure you are about yourself , about what you can and can’t do and how you feel because we hide it. I try to be more vocal but still, I hide a lot. I put on a brave face, I smile and laugh when really I’m miserable because I hide so much.” – Katie D.

How having an autoimmune disease affects my confidence. Having lung disease and joint pain means I can’t walk very far and that I walk so very slowly. People have commented on how slow I walk, like when I come into work: ‘you’re not in a rush, are you,’ for example. I just have to smile and joke it off but it really makes me feel crap. I miss being able to do the things I used to do before all this. But on the positive side it’s nice to be able to appreciate all the things I would have missed before when I was rushing about. I see more now.” – Janey G.

The embarrassment at what I’ve become. I just as soon never leave my house. It’s too much effort to leave my house. Putting on clothes including a bra, constricting clothing that rubs in the painful places and irritates me. The pain of things like having to lift and hold up my arms to do my hair and makeup. Not to mention the self-consciousness from the weight gain and the lack of getting my hair cared for. It’s not vanity, I just look like a slob TBH and I know it.” – Sue L.

10. Fatigue

How tired I get. That simple things like doing groceries or meeting a friend for coffee can knock me out for days. As hard as I try, this is one aspect of my illness that I struggle to keep hidden. I want to live a normal fulfilling life, but it’s hard to do anything when you’re constantly running on empty.” – Sarah-Paige S.

How incredibly difficult it is for me to get through the day. Fatigue is one of my biggest factors and often people don’t understand that after work that’s it, I can’t socialize or catch up on things later. I have to do those things on my days off and even then I’m often too exhausted.” – Melanie F.

11. Not Cleaning Your Home

I don’t invite people into my apartment except my boyfriend and when maintenance needs to come in, I panic, being afraid I won’t be able to clean enough before they come in. (My building has regular checks for bed bugs, fire alarms, etc.) My apartment is a total mess. My bathroom is gross. My kitchen only gets attention when my boyfriend is kind enough to do my dishes. The floor next to my bed has a small mountain of tissues, food wrappers, empty pill bottles, etc. Everything is loaded with cat hair because she sheds like crazy and I rarely have the energy to vacuum. It’s disgusting and humiliating. I had someone come to clean once but I was just so embarrassed that I felt uncomfortable the whole time.” – Christine C.

12. How Much Pain You’re Really In

“Because I don’t shout or say ‘ouch’ constantly and because I look ‘normal’ I ‘can’t be in pain all the time.’ Yet I am in severe pain literally all the time from multiple conditions. When you’ve been in pain every day for over five years you get used to slapping on a smile or ‘normal’ face and grin and bear it. If we did shout out or be vocal about pain we would be constantly shouting and honestly it’s easier somehow to just smile and not show it as opposed to constantly showing it. If we did it would also be very taxing mentally and stress can make the pain worse. So it is easier for our minds if we just act ‘normal.’” – Emma P.

How much it actually hurts. I hide in the bathroom and cry when it gets really bad because I can’t stand my family seeing me in that state. I put on a brave face in front of them. They still see I’m in pain but they don’t see me curled up clutching my stomach or head crying.” – Kirsten B.

Real pain flares. Very few people have actually seen me express the extent of my pain because I hate being vulnerable in front of people. Certain people I know would understand and be supportive, but I just can’t open up like that. It’s something I need to work on.” – Jillian S.

I have fibromyalgia. I once had a family member tell me they had never seen me in pain. The reality is that I’m good at concealing it, and on days where I can’t hide it I don’t leave the house.” – Sierra R.R.

13. Not Keeping Up With Personal Hygiene

“I don’t shower regularly because the water hurts my head and I don’t have the energy.” – Tracey W.

I do good to get a shower every four or five days. Sometimes longer. The energy I expend to simply brush my teeth can be daunting at best. It’s so embarrassing and one of the main reasons I rarely go out in public unless I just absolutely have to, and that’s usually only to the doctor. And then I’m always hoping there won’t be many people in the waiting room. And if there are, I try to sit as far away from them as possible. I hardly ever invite people to my house because what was once immaculate has become less than mediocre. I used to take pride in my appearance and my home, and now I can’t seem to even fathom an ounce to give a damn about any of it anymore.” – Rhonda G.

14. Insomnia

The sleepless nights from the pain. I have to show up to work and perform as well if not better than co-workers while still being in pain and exhausted. I’m literally counting the minutes till I get to lay in bed again, all while trying to be the best worker I can be.” – Candie A.

15. Anxiety

The constant medical anxiety. The fear of my conditions getting worse (Arnold-Chiari and POTS) and the actual breakdowns when the physical pain gets so bad that I can barely take it.” – Amber K.

The anxiety I get over leaving the house without planning out everything. Any spontaneous activity scares me because I don’t know if it’ll cause a flare or if I’ll need meds in the middle of it, a bathroom, to rest or to just go home. In severe cases I’ve had to go to an ER.” – Courtney H.

16. Yourself

I hide myself from everyone, lay on my sofa, cry, pray for comfort and cuddle with my 13-year-old chihuahua while severely fatigued, all-over body pain, nausea and merely hanging on to the hope of a better day when I can spend time with family, my grandchildren and friends.” – Monika A.

All of it: I live alone so no one sees my day-to-day or my really bad times (because I gave up going to the hospital years ago because even my pain doctor leaving standing orders had zero effect on being misjudged and labeled). I’ve always worn a mask/hidden any ‘weakness,’ negative emotions, pain, etc., even long before chronic pain, but it’s so bad these days no matter how hard I try if I’m out in public I get asked, ‘Are you OK?,’ etc. by strangers, usually several times in a short outing.” – Danielle D.

Me – I’m always in my bed.” – Russell W.

17. Guilt

Guilt – just how guilty I feel. Like if I post a picture with a full face of makeup on I start to think if people will believe I’m faking it or even if I have a good week and want to go to a party just asking for permission and the look on my parents’ faces… ugh, it sucks.” – Paula B.O.

18. Exhaustion

Just how exhausted and in pain I really am after the simplest of tasks. I wish I could take off the smiling mask but I truly can’t allow myself to burden people with my suffering so I smile and smile again. But I have everything planned for the day and when hubby changes the plans without talking to me first or makes plans without asking if I could cope, that is a very hard thing to hide and sometimes I end up snapping at him.” – Janet J.O.

How exhausting being in constant pain is, and how it’s possible to be tired beyond belief, yet typing this at 4 a.m.! And how my mind is still the same, apart from some fog, and how frustrating it is to be limited physically when there is so much more that I would like to do.” – Gabbie J.

How bad it is/can get sometimes. How much pain I’m in. How exhausted to the core I can be. How much I grieve ‘normal’ life. How scary it can be at times to not know what your future will look like. The extent of my illnesses and how much they affect my life.” – Lindsay A.

Originally published: June 29, 2018
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