When working isn’t an option

“You seem fine to me.”
“You get to just sit at home all day? You’re so lucky!”
“I wish I got a permanent paid vacation.”
“You’re a student? Okay, but I mean, like, what do you actually do?”

These are all actual responses I’ve gotten when I’ve explained that I don’t work due to my health. People have the hardest time understanding why I “can’t hold down a job” when I appear to be just fine. Such is the nature of invisible illness and the ableist society we live in. (If you don’t know what ableism is, look it up. Pronto.)

It’s one of my biggest insecurities and also one of the reasons I’m hesitant to share this information with someone I don’t know well. You see, we live in a society that believes if you’re not visibly sick, you’re not really sick at all. We also have a way of attaching someone’s worth to their ability to work and function normally. And even when someone has a diagnosis we can see and are mostly accepting of, we tend to believe that if they just try hard enough they can conquer it.

Quitting my job and applying for disability was one of the most difficult decisions of my entire life; one I did not take lightly. I lost a huge part of myself when I stopped working. My social life suffered, I felt stripped of my independence, and I began struggling with feelings of worthlessness and depression. I had internalized the messages I’d been surrounded by — the ones that told me I wasn’t valuable unless I had a job, that I wasn’t as sick as I made myself out to be, and that I could work if I’d just put in more effort.

There are a few things I wish people knew about those who can’t work due to disability:

  1. We wish we could work. We would love to have a career, put our degrees to use, and be able to contribute financially. Working is about so much more than paying bills, it’s about pursuing passions, building self-esteem, and being part of the world around us. Trust me, if we could be working without risking our health (and subsequently, our lives) we would be.
  2.  Being disabled is not a vacation. We don’t just sit around all day. Several hours of my day are spent doing things that directly relate to my health — running to and from doctors appointments, filling out paperwork (to prove that my progressive genetic condition hasn’t suddenly disappeared), doing treatments and taking medications, exercising, making phone calls, waiting on medication deliveries, and sometimes napping (but less like a vacation-y nap, and more of an “utter exhaustion/can’t make it through the day/my eyes are closing as I’m sitting straight up” kind of nap).
  3. Having fun does not mean we can safely or reasonably work full-time. This one really gets to me. I’ve been called out on pictures I’ve posted that show my family spending time outside, traveling, or doing other fun things together. “If you can do all that, you can get a job.” Um… no. Just no. Having a chronic illness does not prevent me from wanting to enjoy my life. I do like to go out and have fun, and I love sharing pictures of those moments, but those things do not mean that I am “fine.” For every picture that is posted, there are so many things that aren’t made visible — the work it took to get there, the hours or days spent recovering (depending on the event), the treatments I needed before and immediately after going out, the coughing, the exhaustion, the accommodations my friends/family had to make in order to include me in those things. Everything in my life is scheduled around my treatments and medical needs. My ability to occasionally go out and do fun things does not equate to the ability to work a full-time job. People don’t have to work in order to “earn” the right to enjoy life.
  4. We are valuable. The inability to work does not make a person worthless. We all have inherent value, regardless of our physical abilities. I really wish that “getting to know someone” was less about the things they do and more about who they are as a person. Someone’s job status should not determine how valuable or worthwhile they are. Instead of asking someone what their job is, why don’t we ask what they’re passionate about? Instead of measuring incomes, why don’t we measure acts of kindness? It sounds a little idealistic and Utopian, I know, but I would love to live in a world where that was the norm.
  5. There is so much that you don’t see.  This one is pretty simple. For everything you observe and think you know about someone, there are about 100 things that you couldn’t even imagine.

******

Just last week, I was doing some paperwork that required a letter from my doctor. Of course, when I saw the letter hit my inbox, I read it before forwarding it on. A couple parts jumped out at me.

“Jennifer is very adherent to her complex breathing treatment, airway clearance and medication regimen, and this enables her to maintain her health and present quality of life.” 

“I do not think it is safe for her to work at all.” 

“I do not expect Jennifer to be able to work in the future due to the progressive decline in health and lung function associated with cystic fibrosis.”

These words have so much weight. I know these things, and the people closest to me know them as well. I know that the best decision for myself and my family is to make my health my top priority. But sometimes, no matter how much I tell myself I don’t care what others think, it’s nice to get this kind of validation. It’s a reminder that I’m doing the right thing, and that no matter how hard I try, I can’t wish or work this disease away.

And I’d rather not die trying to.

******

What are your thoughts? Do you struggle with any of the same things? Has anyone ever said something callous or ignorant to you regarding your inability to work?

15 thoughts on “When working isn’t an option

  1. This hit home for me. It’s like you wrote my thoughts, feelings, & experiences

    Liked by 1 person

    1. Thank you for your comment! I’m so glad this resonated with you. It’s something a lot of people face, but it can be hard to talk about (for me, anyway).

      Like

  2. Amazing I hope you don’t mind I share this. I just recently went on SSD again after stopping going to college but now after two kids and being told I could have less then 2 yrs to live so now I have to do so much to try to get in a transplant list. Seems I do more now then when I held a job it’s so tiring and people just don’t understand it.

    Thank you again really hit home for me a day I know many others !

    Keep fighting !

    Liked by 1 person

    1. Stephanie, wow! That sounds exhausting! I hope you can accomplish all that you need to in order to be listed. I’ll be thinking of you and sending positivity your way!

      Also, I love that you shared this (or are planning to). If it helps even one person understand this issue better, that would be amazing!

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  3. YAAAS, GIRL!! We’ll put and it does totally suck!

    Liked by 1 person

    1. Thank you! It’s something I’m quite sensitive about. I wish more people understood…

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  4. This is exactly how I feel. Some times people can’t see the limits we have to put on having fun. I always do my utmost to be the best I can be and do as much as i can and have recently discovered camping in Dartmoor for 3 days with friends (plus the 500+ miles road trip) is too much for me and have been suffering for the last month because of it.

    Everything you have said resonates so much with me and also opened up some things I hadn’t even realised about myself in regards to this subject so i have a massive thank you to you as well. I’ve also written some stuff about this if you want I’ll link you the blog not sure which episode it is but there is only 6 or 7 posts altogether lol.

    Thank you so much again I’m not sure if you can realise how much this has helped. X

    Like

    1. Wow, Martin, thank you so much for this! I’m so glad it helped! And yes, I would love to read what you’ve written about this.

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  5. Thank you for sharing. I know it’s not an easy life, but you have a purpose!
    My husband has a genetic heart condition that is progressively getting worse. He isn’t listed yet but just a short 20 years ago he was the picture of health and on active duty in the middle east.
    It’s been hard since his diagnosis 8 years ago this week and he’s now been fitted with an ICD pacemaker because of his risk of sudden cardiac death. At 44, he is 10 points from transplant. Likeep yourself, he doesn’t look sick to most because he really tries to care for himself with diet and limited exercise. But, it wipes him out. He is always wanting to work, do his part, etc.
    He is my Heart Warrior and I’m so grateful for him and what he means to our family.
    Stay strong and thank you for your testimony! Prayers, good thoughts and big hugs to you. Keep fighting! #cfsux #hcmsux

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    1. Michelle, thank you so much for your comment. Best to you and your husband!

      Like

  6. It’s like you took my thoughts and wrote them down! My parents and husband know how sensitive I am about this but I’m guessing a lot don’t. A subject I’d rather avoid. Only last year I realised just how sensitive I was about when at a party someone ask what I did, the groups eyes on me, I wanted the ground to swallow me up! There’s so much more to a person than their job and career wish some people realised this. Much love, Beth

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    1. Thank you. I know it can be so hard to talk about! In fact, I rarely say these things in conversation, so it felt incredibly good to write them. Maybe soon I’ll be brave enough to actually start saying them out loud.

      Like

  7. Jamie (Taylor) Bartlett November 4, 2018 — 11:10 pm

    Thank you for this Jenny. Thinking back I imagine the world where I was oblivious to your CF when we were kids. Now you are a bright shining star. I love reading your updates and post. I do often feel like I shouldn’t complain due to my own issues I face daily. However, I have been thinking about this exact subject for a few weeks now. Because my back is getting progressively worse my job prospects seem to be slimming down. I apply for jobs hoping for anything but then face my reality which consist of asking myself if I am physically able to perform the task required for the position. Then once in a while I find the perfect job that doesn’t over aggravate my chronic issues. I fall in love with the position then just like my most recent job the rug gets pulled from beneath me for one reason or another and I am left wondering and wandering in a new job search. I have handled my issues for 12 years quietly but with them worsening I am facing more life changes that hit at the most inconvenient time in life. Then comes the question of do I work or do I not work? Followed quickly by how much longer can I work before I end up permanently damaged beyond repair. Life isn’t fair but we make the most of it right.

    Again thanks for sharing and sorry for my rant. Sometimes it helps when you can talk to someone who is or has been where you are now!

    Liked by 1 person

    1. Jamie, I’m sorry it took me so long to see and respond to this! First of all, thank you for your sweet words. And second, please don’t feel like you shouldn’t complain! Pain and suffering are not relative. You don’t have to (and I would argue that you NEVER should) compare your struggles to someone else’s. What you’re going through sounds terrible, and your concerns are valid. I hope you can find a position that is right for you, or the resources you need if you choose to stop working. These kinds of decisions are never easy! Thanks again for your comment.

      Like

  8. Excellent text. I am a person who is still trying to work full-time, even if I barely rise up quite often in the morning. The job is something that keeps me. But then all day I listen to people who have a headache and don’t know what the real problems are and I think if I’m a fool because I’m still working or they are so weak.

    Liked by 1 person

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