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15 Things People With Chronic Illness Do That Seem 'High Maintenance,' but Really Aren't

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Having a chronic illness often means you have certain requirements and limitations that generally healthy people do not – such as going to bed at a set time every night or avoiding food that could aggravate your condition. You may require extra accommodations when you go out, or need extra help around the house. These “decisions” are often made out of necessity to manage your illness and be able to function as best you can.

However, you might occasionally fear that these behaviors come across as “high maintenance” to those who don’t understand your illness and all the ways it affects you. This can lead to hurtful judgments and misconceptions, which can leave those with chronic illness feeling isolated and misunderstood.

Of course, you don’t owe anyone an explanation and should feel comfortable doing whatever you need to do for your health. But in the hopes of better understanding what it’s like to have a chronic illness and educating those who may be quick to judge, we asked our Mighty community to share some of the things they do that may seem “high maintenance” – and why they actually aren’t. Even if someone is doing the following activities for reasons unrelated to their health, it never hurts to spread kindness and compassion rather than judgment. We never know what a person may be going through.

Here’s what our community shared with us:

1. Dietary Restrictions

Dietary restrictions and buying healthier food. It’s more expensive to buy grass-fed, free-range, etc… and more work to cook and eat at home every day, but diet is incredibly important for managing my symptoms.” – Kelliann G.

I have an allergy syndrome which means I’m allergic to a huge number of foods. The list of what I can’t eat is longer than what I can eat. People sometimes think my shopping and eating habits are high maintenance.” – William B.

Dietary restrictions. It is super awkward to be sitting there with your sack lunch or sack dinner (mostly awkward for others and not me because everyone wants to ‘help’ you find something to eat). Only having a few restaurants I can eat at stinks for everyone else too. I’m sure I seem very high maintenance to most people.” – Tory F.B.

2. Hiring a Cleaning Service

Paying to have my laundry done, hiring a cleaning service to come every so often and help clean my house… these things felt wrong and very ‘bougie’ when I first started. And I ‘don’t look sick’ so I’m sure there’s more than a few judgments going around, people who think I’m just some rich person who’s just lazy, but the truth is with cystic fibrosis I just don’t have the energy to handle carrying my groceries, laundry and whatever else up three flights of stairs. Especially not after a full day at work.” – Lisa J.

I have a domestic assistant come clean my house every other week.” – Samantha S. 

I have ‘cleaning fairies’ come in once a month to clean. Between me and my husband we keep things in order.” – Annette L.

3. Spending a Lot of Time and Money on Makeup

I buy high quality makeup and take my time putting it on every day. It helps me feel normal as well as hiding how awful I really feel.” – Jessica C.

“I spend three hours on my hair and makeup. When I have enough energy to do it.” – Samantha S.

4. Getting Massages

I schedule weekly massages for my fibromyalgia pain. It is not just for fluff. Because often it hurts at the time, but does loosen things up enough to give me some relief, and also helps me sleep better, which in turn helps the pain.” – Billie Jo R.

I get acupuncture and a mini massage weekly. It helps with my chronic pain but also with relaxing me.” – Lala M.

5. Having to Wear Certain Clothes

Having to wear certain clothes! You will never find me in jeans because my body just won’t allow it, and I’ve gotten few remarks about how I dress, especially in regards to maxi skirts or dresses.” – Kristin N.

6. Buying Expensive, Upgraded Items

I bought a very expensive adjustable bed, because after 17 blood clots, my legs hurt and being able to raise and adjust them easily and quickly via mechanics and not semi-successful, endless pillow fluffing has helped with the immense pain that comes with them. And on the few occasions I travel, I also fly comfort/business class (and sometimes first) for the same reason: need to extend those legs as much as humanly possible so I’m not crawling off the darn plane.” – Elizabeth K.

I love driving so much and I love my car but it sadly is not as comfortable with my arthritis. I want to get a newer car with upgraded safety and interior features to keep me driving and comfortable!” – Heather E.

7. Getting Your Groceries Delivered

Getting my groceries delivered.” – Shannon G.M.

“Having my groceries and other goods delivered.” – Lisa J.

8. Traveling With Lots of Stuff

I travel with tons of [stuff]. Prescriptions, skin creams and lotions, a steamer for food and a portable George Foreman grill, and have to stay in hotel rooms with a kitchen to cook my own food. I can’t be around crowds. It makes me look like a diva and antisocial. But it’s just because I need all of these things to function normally. I would love to be really easy. I miss the days when I could just pack everything in a duffel bag and sleep on the floor. But when I travel it’s a major production.” – Stephen F.

9. Taking Baths

I try to take hot baths a few times a week with Epsom salt. I work full-time right now and it’s just really hard on my body with my Crohn’s disease. The baths help relax my muscles and relieve stress which helps prevent flare-ups.” – Alexandria F.

I take a daily Epsom salt bath for at least an hour and a half.” – Acadia M.

10. Buying Yourself Comfort Items

“[Buying] the essential oils, weighted blanket and Comfort U pillow that help.” – Pamela J.

I buy things for myself. Things like comfortable clothes, certain foods, electronics, TV series on DVD. It seems selfish, but it’s all in the name of keeping myself ‘sane.’” – Natalie P.

11. Eating Out Frequently

I will eat out often but be picky about the food quality. I can’t be eating fast food. It may seem high maintenance or I’m throwing away money but I can’t always get up in time to make a lunch or if I’m at the doctor’s for hours or have to fast for tests I have eat immediately after I’m out or if I’m out far from home. Or even buying better quality food. Even if I’m hanging out [with] friends I have to eat after a certain time or take medications.” – Day L.

We have takeout for diner at least once a week because I’m too tired to cook.” – Melanie C.

12. Asking for Help With “Simple” Tasks

I ask people for help doing little things. Like getting me a glass of water or getting something from upstairs. It’s not that I like people waiting on me, it’s just too difficult for me to do it myself sometimes.” – Lauren H.

13. Taking Taxis Everywhere

Having to get taxis everywhere because I’m not well enough to use public transport.” – Joanna O.

14. Getting Manicures/Pedicures

I get a manicure every other week. On days I can’t bring myself to do the bare minimum to meet the dress code at work it helps me feel more put together.” – Lala M. 

I get a pedi once a month, it’s too painful to do it myself.” – Shonda C.

Get pedicures due to Raynaud’s and the pain in my feet/legs.” – Tiffany T.

15. Resting

Rest. And people don’t understand – they ask why I’m so tired all the time.” – Marie G.

“Having to take rest/sleep/alone time feels high maintenance.” – Katie G.

Originally published: April 6, 2018
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