What We Wish You Understood | Working With Chronic Illness

Living with a chronic illness is hard and comes with many challenges. Including challenges most never thought they’d face, especially at such a young age. For instance, when I graduated from nursing school I never dreamed that I would only be able to work for ten years before I had to leave my job to care for myself. That being said when you think of chronic illness you wouldn’t automatically think of the fact that many who suffer from a chronic illness will have to leave the workforce long before they wanted or planned to. But it’s true, sadly, many end up having to leave their dream job or the career they loved to stay home and take care of themselves. Which in and of itself brings up challenges. The biggest being that most around us don’t understand us or our decisions to leave the workforce. Or what that looks like as far as what we can and cannot do now that we are no longer working.  

“I am still a human being worthy of respect and dignity.  No, I can't do things any normal way anymore and my house isn't perfect, but I still deserve respect” -Amy 

We wish that people would remember that even though we are no longer working we still are worthy of respect and dignity. If you were to sit down and talk to most people who have had to make the choice to quit working, you would hear about how hard the decision was for them to make. Beyond that you will also most likely hear about the frustrations we deal with routinely with those closest to us, due to the fact that they don’t seem to understand why the decision was made to leave the workplace. Nor do they understand the expectations and responsibilities that fall on us now that we are home. You might also hear about the frustration surrounding the facts that we are still us and still deserve the respect we were given before we chose to leave our jobs. However, those around us don’t seem to remember or understand that just because we are at home all day doesn’t mean that we can now take care of ALL the household responsibilities. Honestly though, It’s hurtful when those closest to you assume that you are lazy because you’ve decided to stay home. Or when they assume that you can take care of all the things since you are no longer working. What most people don’t understand is that being home and taking care of your health is a FULL TIME job.

“Managing a chronic condition is a FULL-TIME JOB! Between doctors appointments, flare symptoms, fatigue, insurance, and just fundamental self care that healthy people take for granted, I feel like there's not enough hours in the day.”-Emma

We wish those around us could understand that being chronically ill is often a full-time job. I think it’s fair to say that most of us will have on average 3-5 appointments a month just to see a doctor. That doesn’t include infusion appointments, visits to the lab or urgent care appointments when you are ill.  So a person who isn’t chronically ill would probably see that and think okay that’s not to bad. But the truth of the matter is that one Drs visit (or any other medical appt) can require several days of rest after the appt for our bodies to recover. So if we break that down we can assume that on average we will be down at least a minimum of 6-10 days a month due to doctor visits and the minimum recovery period. If you add in days for flares  or extra days one needs to sleep because they were up all night due to pain, approximately half of each month is gone just to taking care of ourselves. So you can see that there isn’t a ton of time left to take care of the house or grocery shop. 

“Going to the grocery store wipes me out for 3 days and that's if I make it through the grocery store to begin with. If I make it through the store, then I barely make it home, someone else needs to bring the groceries in and put them away.”-Carol

We wish those around us could understand that sometimes the smallest of chores can totally wipe us out. If we had a nickel for every time someone has said to us something like “Since you’re home you can take care of _______(insert whatever task applies)!”, or “I don’t understand why you can’t keep up on the housework since you’re home all the time!” or even “What do you do all day!”, we would be set financially. Most of the time our families aren’t trying to be mean, but their jabs and negative opinions hurt. Tasks that seem easy like simple household chores or grocery shopping for an able-bodied person can be very taxing to someone who is chronically ill. Just because I stay home doesn’t mean that I will always have a spotless house or have dinner on the table every night. Chores like sweeping or vacuuming  may require multiple breaks in order for the job to be completed. Then it is highly likely that it will also require a break to rest after completing the task. So a task that would take most 5-10 min may take us an hour or more due to needing to rest. Going to the grocery store is another beast. If you feel well enough to go, and not just put in an order for pick up, you can just expect to have to have a nap afterwards. But there’s a good chance that even a quick trip in will require a break or two while your in the store. What those who are able-bodied probably don’t understand is that we can’t just power through and get it all done in one setting like they might be able to. Overexerting ourselves and doing more than we should to make someone else happy will just make things worse and will require more downtime. I can’t speak for everyone but I feel like most of us wish we could do more and get out of the house more but our bodies just won’t allow it. No matter how ashamed or guilty we feel. Or how much we hope and pray for a change. 

“One thing my husband still has a hard time with is how much I want to talk to him when he gets home. I tell him "You GET to go to work. You GET to talk to other people and experience different things. And you GET to be paid for that. I only see people in my house, day in and day out. It's boring, I have no friends, and what I wouldn't give to be able to make money of my own on a regular basis.”-Melanie

We wish those around us could understand that staying home is not all it’s cracked up to be. Staying home sounds great to those who have a choice and are able to come and go as they please. But once you’re to the point that you can no longer work, you no longer feel like getting up and getting out.  I can’t even tell you how many times I’ve had someone say “You’re so lucky to get to stay home all day!” To which I want to respond and say sure it’s great to have no one to talk to during the day except the animals. It’s great to no longer have extra money to do the fun things you're used to like getting your hair or nails done. Or just have your own money in general. It’s also great to stare at these same four walls all day long. People who are able to work outside the home take for granted that they get to leave the house every day, and not just for medical appointments. They take for granted that they get to see people and talk to them face to face whereas we don’t.  We keep in contact with people via text for the most part, which is great don’t get me wrong, but it doesn’t replace a face to face interaction. Beyond the things they may take for granted, it seems like it’s hard for others to understand how much guilt we carry for having to leave work. 

“I’ve struggled with guilt. In time, the symptoms become a new normal. You come to accept that your pain will be there when you wake up and when you go to sleep. But when you’re sitting at home alone, so many negative thoughts run through your head— how can we afford to live without my paycheck? Will my husband/ partner/ loved ones have to work harder and longer hours now because of me? What can I do in my position to help when I’m barely hanging on to this life?” -Brett

We wish those around us could understand the guilt we deal with once we have to leave the workforce. While you may not see it, many of us struggle with guilt about not being able to help our families physically and financially. We feel guilty when we have to ask for help physically to get things done around the house. We also feel guilty when we have to ask someone to take off work to take us to an appt or when they have to spend hours with us in the waiting room of  Doctors offices or an ER. As much as we hate that we are no longer able to do those things for ourselves, we hate having to ask for help more. Oftentimes we will push ourselves to do more than we should because we feel guilty. It’s hard to sit at home and do “nothing” because your sick, and then watch your family step up and do the things you should be doing. It’s easy to feel like we need to do more around the house to somehow cover for the ways we can no longer contribute to the family. That being said the same goes financially as well. When you are used to being financially independent and being able to do pretty much what you want when, then suddenly you have to ask someone else to help support you, you can’t help but feel guilty for no longer being able to contribute. 

Leaving the job/career you love due to declining health is a very hard decision, and one that isn’t taken lightly. While retiring early may sound grand, it’s not. You lose out on precious time out of the house, adult conversation and your own income. Beyond that it’s really hard for those closest to us to understand that just because we are home all the time doesn’t mean that we can take care of all the things, along with keeping the house up.  It’s hard for them to understand that we feel guilty asking for help and for not contributing to the family. But all we can do is to explain how we are feeling and hope for the best. Not everyone is going to understand that leaving the workforce early in life isn’t as grand as it sounds.  

With Love,

Amber