One of the most common things people with chronic illnesses or disabilities hear is, “You’re so lucky you get to rest all day.” This adds insult to injury. Working can be difficult and downright impossible for many people with illnesses. I asked people on Fashionably ill’s Facebook page about how illness affects their ability to work. Readers’ responses fell into different groups:
- People who can work full-time jobs
- People who really can’t work but are forced to in order to pay for the medical bills—many of them report feeling worsening of symptoms because they cannot rest
- People who can work if they are given accommodations
- People who can work part-time jobs
- People who create their own hours (starting your own business can be harder for some patients more than others)
4 Things NOT to Say to a Sick Person:
1) You’re so lucky—You get to take naps/rest: Most sick people would rather work than be disabled. When we’re in bed, we are fighting fatigue and pain (physical and emotional). When I say I’m tired, my dad will say, “From what? You didn’t do anything.” I answer, “From having five illnesses. You should try it some time.”
2) Why can’t you work? You look fine: Some conditions, like fibromyalgia, depression, bipolar disorder, asthma, and various autoimmune diseases, are invisible illnesses. Not all pain can be seen with the naked eye.
3) I don’t know why you can’t work; so-and-so has the same disease and works a full-time job: It’s important to remember that with every illness, there is a spectrum. Not every one is the same. I went through college with bipolar 2 and polycystic ovarian syndrome—sometimes people say, “I don’t know why [xyz friend] can’t finish school just because she has bipolar when you graduated at the top of your class.” I remind them that every case is different. Just as I was able to do things some people with mental illness cannot do, there are people with Myasthenia Gravis (MG) and other neuromuscular illnesses who can do things I cannot do (at least not yet).
4) You are being lazy/Toughen up: Nothing could be further from the truth. Being a patient is a full-time job. We have to keep track of medications, hospital appointments, insurance companies, and push past pain and fatigue whilst fulfilling other roles: parent, spouse, friend, or employee. I’m currently in physical therapy for Myasthenia; MG is the hardest class I’ve ever had—harder than anything I ever took in school.
Fashionably ill Readers Speak
Renee, “I wish I could work. It got to the point where I couldn’t even pay my medical bills…I get so excited thinking about having a job if I am ok one day. But the next day I realize it is unrealistic. Sometimes I think I would like it if people were forced to live with a chronic illness for 60 days…I think that might be mean but being sick and misunderstood is very difficult.”
Cynthia, “Sometimes with fibro working keeps me from thinking about the pain…Chemo/cancer treatment has been a much different and more difficult journey. I can’t focus or think much less complete a task like I want to do.”
Kris, “I need to work! Even more now with my rent going up. But I worry about it if I do get a job, how am I going to accommodate ivig or when I can’t drive there because my arms aren’t working? I just flat out need to work! But I really don’t think it’s good for my MG.”
Ade, “It was impossible for me with what I was doing. I tried to find other jobs that would fit me better with my conditions but haven’t even been given a chance at an interview. The last job I had, with accommodations it maybe would have been easier.”
Michelle, “I love when I hear “Well I’M tired TOO!” Not the same kind of tired. You’ll feel better after you rest.”
MaryRose, “People think if you are not engaged you have endless free time..MYTH! FREE TIME if that’s you wanna call it—it is for worsening of symptoms, healing, and recovery.”
–Your Stylist, Jessica Gimeno
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