18 'Embarrassing' Parts of Flare-Ups You're Not the Only One Experiencing

There’s no question that chronic illness involves many unpleasant and frustrating symptoms. But when your symptoms flare up, or you go through a period of increased disease activity, the effects can be far-reaching.

Dealing with all the ways chronic illness affects your body, mind and lifestyle during a flare-up is a feat in and of itself. But when we bring others into the equation – be it friends, family or strangers – things can get more complicated.

Even if the people in our lives are incredibly understanding, or even if we try to not worry what those around us think, the reality is that, sometimes, we may still feel some pangs of self-consciousness or embarrassment. Chronic illness affects us in such personal ways, and it can be difficult when your health leaves you physically or emotionally vulnerable.

You never need to be ashamed of your health or any of its effects; oftentimes these things are completely out of your control. But if you do feel this way, it’s OK – there is a community of people here who understand and are here to support you. Whether you’re struggling with a symptom that’s not exactly dinner table conversation or hoping others won’t realize how long it’s been since you showered, embarrassment during a flare-up is normal – and you’re most certainly not the only one experiencing it.

We asked our Mighty community to share an “embarrassing” aspect of flare-ups that often goes unspoken to remind those with chronic illness they’re not alone. By illuminating these challenges, we also hope friends and family can develop a better understanding of what their loved one experiences during a flare. Increased compassion and respect can help people with chronic illness not feel embarrassed when faced with a difficult symptom or side effect.

Here’s what our community shared with us:

1. Brain Fog

“I work in hospitality so the worst for me is when brain fog causes me to forget words or slur my words. Guests look at me like I’m crazy or drunk because I look perfectly healthy and happy. It’s so embarrassing it’s brought me to tears a few times.” – TheAngryGnome

“My most embarrassing symptom, even worse than IBS, is brain fog. I miss so many appointments simply because I forgot I had them… even though I write them down!! I also mix things up so that several stories run together. Not only do I repeat myself but the things I say sound like I’m making them up or lying.” – Nancy T.

Some helpful articles:

• The Small Tricks That Help Me Cope With Brain Fog
• 12 of the Most Surprising Things That Helped People With Brain Fog

2. Difficulty Completing Daily Tasks

“Being 30 years old and needing help with basic tasks most take for granted: showering, getting dressed, cooking, cleaning, running errands. Stuff that should be doable and normal for most my age, is difficult if not impossible without help.” – Heather T.

“Not being able to get dressed by myself. As a now 20-year-old (I’ve been chronically ill since 13) it still sucks so much when I’m flared up and need help to get dressed. Technically if I needed to I could do it myself but it would be a much longer, fatigue-inducing and painful experience.” – Kiersten D.

Some helpful articles:

• 50 Everyday Tasks, and What They Feel Like for a Person With Chronic Illness
• Practical Solutions to 10 Everyday Problems Those With Chronic Illness May Face

3. Not Being Able to Shower

“Not wanting to shower. I go days just avoiding it because, 1) it’s too painful, 2) it takes too much energy, and 3) it’s hard, functionality wise.” – Libby R.

“Not being able to shower as often as I’d like. I used to shower sometimes twice a day, now I’m lucky if I make it in twice a month. The water burns when it hits my skin. And just the simple movement of raising each leg high enough to get into the shower is enough to make me feel like I ran a marathon. Forget actually washing my hair, myself. And then I’m just hot and exhausted when I get out. It’s like it never even happened. It makes me very embarrassed and ashamed.” – Jennifer M.

“Personal hygiene takes a bit of a dip. Not just the struggle to shower, but things like struggling to clean yourself after using the toilet etc.” – Kelly W.

Some helpful articles:

• A Love Letter to Anyone Who Struggled to Shower Today
• 26 ‘Hacks’ That Can Make Showering Easier If You Have a Chronic Illness

4. Bowel Issues

“My bowel movements are extremely painful. Like while in the restroom I profusely sweat, shake, cry. It’s as if I’m in labor. And no one really likes to talk about that.” – Britney S.

“Incontinence/uncontrollable bowel movements. When I started having these issues in February, I could not believe that at 20 years old, I was considering adult diapers. I get so embarrassed when we go out or to a friend’s house and I’m ‘that person’ spending 20-30 minutes in the bathroom.” – Lauren H.

Some helpful articles:

• 18 Products That Can Make Going to the Bathroom Less Crappy
• If You’re Constantly Running to the Bathroom, These 20 Memes Are for You

5. Unpredictable and Fluctuating Symptoms

“I can be very sick one day, and relatively fine the next, and then sick again the next day. I am embarrassed because even those close to me can’t see how the weather one day put me in bed, it cleared up so I was able to make it to work, then I was exposed to a strong scent and got put back in bed. I know to many I just look like I am ‘faking’ and have even been accused of [it] in backhanded ways.” – alura5

Some helpful articles:

• Finding My New ‘Normal’ Amidst the Unpredictability of Illness
• If You Have an Unpredictable Chronic Illness, Keep These Items Handy

6. Painful Sex

“Not much embarrasses me but I spent years trying to avoid talking about the painful sex. I love my husband and want to give him everything but with no sex drive, a fear of the pain and daily pain that keeps me out of ‘the mood’…a sex life isn’t realistic in my flare-ups (which are most of the time because I work).” – aleyaG

“Sex is always an issue with a flare-up. For men, it can be intensely uncomfortable, and the pelvic pain that follows afterward can horrible. Think how much pain you experience — now try to keep your desire going (i.e. staying erect…) and stay focused on your activity. When pain totally disrupts your focus (i.e. lost erection…), right in the middle of intercourse, it can be frustrating and embarrassing. It’s almost worse when your partner is interested, and you can’t work up the desire because you hurt too much. Sometimes you are even afraid to try — what if the pain wins again? No stress there…” – Christopher H.

“How this awful disease affects your sex life. No drive for it, or when you do feel up to it how bad it kicks your ass afterward. And that when it’s over and you’re sometimes crying in pain, there is nothing you can do or say to make your partner not feel bad or like it’s their fault.” – Meagan H.

Some helpful articles:

• 14 Ways to Be Intimate With Your Partner If Penetrative Sex Is Too Painful
• How to Talk to Your Partner About Painful Sex

7. Frequent Falling/’Clumsiness’

“Losing my balance and falling. It’s embarrassing and psychologically jarring!!” – Sundari L.

“I have EDS [Ehlers-Danlos syndrome] and I’m really clumsy so I fall down quite often and people run to ask me if I’m alright or if I need help and I just tell them, ‘ohh I’m fine, thank you.’ I’m glad there are many nice people out there who try to help and I’m sure they must be thinking, ‘wow, she’s so clumsy,’ but I’m not clumsy, I just have EDS.” – LilyEds

Some helpful articles:

• The 5 Stages of Falling I Go Through Due to My Chronic Illness
• I Will No Longer Apologize for Falling Over Because of My Illness

8. Needing to Cancel Plans

“Having to cancel important commitments last minute. I teach piano lessons. My students pay at the beginning of the month for that month’s lessons. I hate canceling because then I have to make the lesson up later or credit the lesson on the next month’s bill.” – Lori C.

Some helpful articles:

• 16 Reasons a Person With Chronic Illness May Cancel Plans
• 4 Lessons I’ve Learned About Having to Cancel Plans Because of My Illness

9. Muscle Weakness

“Not being able to move or hold onto objects.” – evergreen

“Sometimes when I am holding onto something, my hand all of a sudden lets go.” – Cherie S.

Some helpful articles:

• Why I Am Strong Despite My Chronic Muscle Weakness

10. Not Getting Dressed

“When my nerve damage flares up, it’s incredibly painful to wear clothes. Especially restricting things like bras or underwear. There have been days I’ve just thrown on leggings, a T-shirt and sweater because it’s the only thing I can wear. I’m sad to say I’ve gone out in public like this. I feel so embarrassed because I always saw people who wear pajamas to the store, as being lazy. Now I’m one of them and I feel awful for ever thinking that.” – Hanna M.

Some helpful articles:

• Why It Matters That I Got Dressed Today
• 4 Ways My Illnesses Affect What I Wear

11. Weight Fluctuations

“I find my weight gain from being unable to be active anymore embarrassing. I used to be fit and strong, now I’m very obese and it’s the thing that bothers me the most.” – Jess D.

Some helpful articles:

• 3 Ways to Boost Self-Confidence If Your Weight Has Fluctuated Due to Illness
• 3 Coping Mechanisms for When Your Weight Fluctuates Because of Illness

12. Exhaustion

“The fact that even though I work from home, I get in bed before 8 [p.m.] every night from pure exhaustion. Most days I don’t even leave my house, and I am only 28. I’m always so exhausted, not only from my health problems or my work day, but also from the treatments. Methotrexate really knocks it out of me for [four to five] days, and then it’s time to take the next round.” – rapidreader

Some helpful articles:

• 9 of the Most Surprising Things That Helped People With Chronic Fatigue
• 24 Signs You’re Not ‘Just Tried,’ You Have Chronic Fatigue

13. Mood Swings

“My memory and my mood swings. I can’t remember something and I get super flustered about it and I’ll snap at people without realizing. I’m grateful for understanding friends and family, but I’m still embarrassed.” – Sierra N.

“Random anger spurts. or even just crying uncontrollably in public because I’m in so much pain.” – Gwen T.

“When people interpret my mood as bitchy when in fact I am in a lot of pain. I’m just quiet. Give me some credit for showing up.” – Kamela D.A.

Some helpful articles:

• The Emotional Triggering That Happens When You’re Chronically Ill
• 28 Unexpected Emotional Symptoms of Chronic Illness

14. Feeling Like a Burden on a Loved One

“Needing my teenager to basically be my caregiver on my rough days. It’s humiliating for me, and it makes me feel so guilty that I’m burdening a child with adult issues. It has made him an incredibly compassionate person though.” – Gayla S.

“Feeling like a burden. I’m stubborn (to a fault) and hate having to ask for help because I feel like it shouldn’t be anyone else’s responsibility to help care for me. This leads to putting off necessary tasks like cooking and eating food, showering, doing laundry etc…” – Jordyn A.G.

Some helpful articles:

• Why Having a Chronic Illness Never Makes You a ‘Burden’
• The Guilt of Depending on Someone When You’re Ill

15. The Duration and Frequency of Flares

“Having flare-ups too often. People are often understanding until you come in for the fourth day in a row still dragging your ass because of the pain.” – Sam T.

Some helpful articles:

• 26 Things We Don’t Talk About During Chronic Pain Flare-Ups
• 11 Things I Do to Manage Bad Flare-Up Days

16. Sensory Overload

“Sensory overload… I stay in a lot due to dysautonomia/POTS so when I do get out, it happens almost immediately… I shake, hot/cold flashes, words scrambled, brain fog, etc… so embarrassing.” – Samantha R.

“Just today I had to leave a family lunch outing because the restaurant smelled of strong spices and herbs and it was really hot and crowded. I had a meltdown and had to leave outside. We ended up having to leave and go somewhere else. I’m pretty embarrassed how I acted and that those kinds of things triggered me into a panic and anxiety attack. My husband understands my triggers, my other family, not so much.” – Kathy L.

Some helpful articles:

• 21 People Describe What Sensory Overload Feels Like
• 5 Things I Want You to Know About Sensory Shutdowns

17. Walking Slowly

“I am embarrassed by how slow I have to move. Between that and my cane, I feel like I’m always in somebody’s way.” – Sarah M.

“I get embarrassed when I can’t walk around properly or that I’m very slow, people look at me like I’m taking the piss (cause I’m young).” – Brie H.

Some helpful articles:

• I Will No Longer Apologize for Walking Slowly Due to Pain
• What It’s Like to Be a Sloth in a Land of Cheetahs

18. Bloating/Swelling

“I have PCOS [polycystic ovary syndrome] among other things. When I’m having a flare-up my abdomen swells up and I look six months pregnant. I basically live in big T-shirts and leggings.” – Randi E.T.

Some helpful articles:

• 22 Legging Brands People With Chronic Illness Recommend
• Why I’m Daring to Love My Chronically Ill Body

You don’t have to feel embarrassed by any of the symptoms or side effects you experience during a flare-up – but if you do, know there is a community of people here who understand.

If you’re in the midst of a flare and need support, we are here for you! #CheckInWithMe to share what you’re going through, or #DistractMe to take your mind off your symptoms.