16 'Embarrassing' Parts of Being Young and Chronically Ill We Don't Talk About
In many people’s minds, the words “young” and “chronically ill” don’t seem to go together. Illness is often thought to be mainly reserved for older adults. But as everyone in our community knows, being young doesn’t mean you can’t have serious, chronic health challenges. And when you’re young and chronically ill, that misunderstanding can add more challenges on top of the physical symptoms you’re already dealing with. Even though you should never feel like you need to be ashamed of your body, dealing with an illness others don’t understand because you’re “too young” and don’t “look sick” can leave you feeling the occasional pang of embarrassment.
You might never feel embarrassed about being young and chronically ill, and that’s completely OK! But in honor of those who do sometimes feel embarrassed due to certain aspects of their illness, and to help bust some stereotypes and misconceptions about age and illness, we asked some of our Mighty readers to share the “embarrassing” parts of being young and chronically ill that aren’t talked about much. Perhaps, with more understanding and compassion from those around us, we could experience those pangs of embarrassment less often.
Here’s what our community told us:
1. Being the Youngest in the Doctor’s Office
“I’m always the youngest person at some of my specialists’ appointments like the cardiologist for my tachycardia. I was the only person under 50 in the waiting room for my colonoscopy last year. Just people in general telling me I’m ‘too young’ to have all these medical issues.” — Allison M.
“Being the 23-year-old and the only one using a cane in a waiting room filled with 60- to 90-year-olds. That one is fun.” — Paige W.
2. Walking Slowly
“Walking slower than the grandparent-aged people when you’re at the supermarket — maybe not the most embarrassing but in frequency it is!” — Helen H.
3. Cognitive Difficulties
“I forget many things, quickly. Very embarrassing in a group of young people, asking the same question for the fifth time that night.” — Chanel S.
“The cognitive difficulties are also super embarrassing. For instance, when you get lost in your own town, using a GPS. It’s a joke and I laugh, but it is embarrassing.” — Rachel P.
4. Being Unable to Do What You Want With Your Kids
“Not being able to go places with my kids unless I have someone to help me. It always confuses people, especially if they are older than me. I’m always told, ‘When I was your age I was single with (however many) kids and I had to take them everywhere with me. You could do it if you would just try.’ I try to explain or just let it go but it really hurts when the same people tell me that over and over. I wish I could handle them on my own but people just don’t get it.” — Linda C.
“Not being able to play with my kids is the worst. I know people assume I’m just a lazy, crap mother but I just can’t keep up. Being judged for an invisible illness is awful.” — Jessie E.
5. Using Disability Accommodations
“Even if I feel like I need to use public [disability] accommodations…I don’t because I’m afraid of being judged or that I’ll be taking it from a person who ‘needs it more than I do.’ This has often led me to doing things like falling down and passing out in public. That alone is embarrassing, but instead of helping, people generally snicker because of my age and assume it’s from something like drugs. I’ve never done drugs in my life.” — Sarah R.
“Needing a [disabled] placard. When anyone sees a young person park in a [disabled] spot, even with that placard (which has to be prescribed!), they automatically assume that you are just being lazy, that you are stealing a spot from a needy person, being selfish in your youth or something. I have gotten some of the worst looks, mean side comments and judgments when using that space. I need that space. I don’t use it all the time, only when I need it. Or when I can’t trust my body to know if I will need it… It is embarrassing and awkward. But I do need them.” — Catherine M.
6. When People Assume You’re Under the Influence
“When people assume you’re young so you must be stumbling/dizzy or sick due to intoxication. Or people assuming you’re recovering from a night out partying when really you’re just recovering from life.” — Carly J.
7. Being Unable to Lift Heavy Things
“Being the one not able to walk far or lift things up. I remember when I was much younger, my friend’s mother asked us to help pick up these heavy iron chairs. I explained I wasn’t super strong but I would try to help. I was about halfway done with the first chair while everyone was going back for second. The mother said, ‘Wow, you are weak.’ In the most condescending tone ever. That one stayed with me a long time.” — Paige W.
8. Needing to Sit Frequently
“Sometimes needing to sit down in odd places or use partition rope poles as a prop because I just can’t walk or stand any more. Standing still feels worse than walking for me. Lines are a hassle. Occasionally needing a wheelchair to be able to shop and being looked at like I’m just too lazy to walk. I’m working on trying not to let it get to me and doing what I need to do regardless.” — Kristie H.
“Needing to sit down on public transportation and in public places. People are usually more than willing to give up their seat for a pregnant woman or elderly person, but a young(ish) woman with no visible impairment? Forget it. Even with my cane, I get lots of dirty looks. I’m sure many people assume I’m just lazy because I’m overweight.” — Melissa H.
9. Bowel/Bladder/GI Issues
“Having to go to the restroom a lot more than a normal person would. I always get funny looks. ‘Yes, I know I went 30 minutes ago.'” — Elizabeth T.
“The most embarrassing thing for me would be having no control of my bladder. I have interstitial cystitis which causes me to feel like I always have a UTI, and pelvic floor dysfunction that causes me to have bladder spasms. They are very unpredictable and its not much fun to be in public when one hits.” — Ruby H.
“The amount of GI problems and pelvic floor dysfunction. It’s hard to deal with let alone talk about incontinence issues and GI things. People don’t want to hear about it but often it is my largest problem.” — Nikki S.
10. Explaining Your Illness to New People
“I was diagnosed at 18 and am now 27. Fibromyalgia can be really embarrassing when trying to make new friends or go on dates. I’d prefer to keep my illness to myself when meeting new people but it’s impossible when I’m always having to explain why I can’t do something or why I have to do something my own way. For example, I have to sit in the front seat in the car so I don’t get sick and I have to control the temperature. Before fibro, I was very laidback but now I have to control a lot of variables to prevent more symptoms.” — Jessica S.
11. Frequent Sweating
“Nobody understands how little it takes before you are about to collapse. Getting hot and sweaty leading up to that (despite the temperature out) makes me super embarrassed because ‘normals’ don’t know what it’s like. You are dripping sweat but it’s 50 degrees out? We walked across a big parking lot, of course I am.” — Lex F.
12. Difficulty Having Sex
“I think sex is always an ’embarrassing one.’ Having to stop because you’re in too much pain, or you’re just too exhausted is really hard. Not that it matters when you’re found someone you love and trust, but it’s always hard with someone new.” — Toni K.
“I have hypermobile Ehlers-Danlos syndrome. I dislocate 25 to 30 joints a day. I dislocate my hips every single time I have sex and usually my wrists, shoulders, ribs, and sometimes jaw. My husband and I will have to stop and he has to get them back into place. Sometimes they dislocate so bad that I start crying mid-sex. There are things we enjoy doing that I can’t because it would cause even more dislocations. Most times we laugh it off but when it’s passionate or romantic, it kills the mood. It’s embarrassing and frustrating that something so basic like having sex with my husband is ruined by EDS. God forbid we ever divorce or something ever happens to him. How do I explain this to someone else? I’m only 21. Twenty years down the line, who knows how bad it’ll be.” — Mikaela C.
13. Finding a Job
“Job hunting is difficult, even in professional jobs, because of expectations that a young person can work overtime, nights, weekends or just have a lot of energy. It sets you apart (in a bad way) from other candidates because you can’t bring ‘endless optimism and energy’ when you are dealing with a lot of medical problems and the side effects of all your meds cause fatigue.” — Sara M.
14. Being Unable to Attend Social Events
“Having to cancel plans last minute because of an increase of symptoms.” — Stephanie L.
“Having to miss out on gatherings due to fragrance allergies (candles, cologne, plug-ins, strong-smelling hair products, etc.). Some people think if they don’t sit next to me it is OK. It’s usually not.” — Kerri F.
“Always canceling on friends, never making plans out of fear you’ll have to cancel them anyway.” — Leah R.
“The entire social aspect. Not graduating college on time. Having to cancel on friends. Not being able to go out for drinks or to parties like everyone and in that not being able to make friends the same way.” — Kourteney K.
15. Changes to Your Appearance
“My chronic illnesses have destroyed my teeth and I have had to have all of the top ones removed and shortly all the bottom ones… I’m 28 and lost all my teeth! Not much gets discussed when it comes to how being sick affects your appearance! I also have lost a lot of hair, and my eyebrows don’t grow in so I have to draw them on… my self confidence is practically non-existent because all I see is a sick person!” — Amanda E.
16. Having a Different Lifestyle Than Others Your Age
“Some young people who don’t understand consider you to be ‘high maintenance’ because of lifestyle adjustments you have to make.” — Julia C.
“When the older adults are all complaining about their aching bodies and high blood pressure etc., and you join in with an ‘I hear ya’ or a ‘Me too’ and they all just look at you like you have no idea… But you really, really do.” — Terri D.
“Having a totally different way of life and way more responsibility for your life/actions. Also hearing the sentence ‘I feel so old’ from people who are like 10 to 20 years older or the pitying looks from elderly people, saying it’s such a shame as I’m so young.” — Leonie G.
Getty photo by marzcaz