Working with Chronic Illness | Returning to Work with a Chronic Illness | Relapse | Check in Survey | Relapse Chronic illness
Accommodations and disability benefits, Work Life

Returning to Work while Chronically Ill Check-in Survey

Has it been about four to eight weeks since you’ve returned back to work after being out on extended leave? If so, that’s fantastic!

Maybe you were out because your illness was recently triggered, you had surgery, your chronic illness relapsed, maternity leave or another reason. Whatever the reason, welcome back to work!

How’s it going? How are you feeling? Is the transition going okay or do you think things could be going better?

The reason I’m asking is that anytime you change your schedule or start doing something more physical (such as going back to work) it could affect your chronic illness.

The Last Time I Returned to Work

When I returned to work after my second maternity leave, my body was not functioning properly. In fact, I had started to relapse while on maternity leave and didn’t realize it. I thought I was just having a few bad days. It took me about 6 weeks of being back at work to realize my body was not doing okay, and it took me another 6 months to admit to myself I had relapsed.

You can read about my relapse here or you can start at the beginning of my chronic illness journey here, but don’t forget to come back!

When I went back to work, I was emotionally fine, but physically I was a wreck. I couldn’t figure out why my body wasn’t functioning again. I hadn’t been diagnosed with Functional Neurological Disorder (FND) yet. At the time, I was still under the impression my condition was caused by a medication interaction and I would make a full recovery.

After six weeks of work, I could barely get myself out of bed when my alarm went off. The fatigue, muscle aches, and inability to move my legs were sometimes so severe I couldn’t get up for an hour or two after my alarm went off. There were days where I literally dragged and peeled myself out of bed because I was so fatigued.

The one thing I didn’t realize that was going on was that I was in a constant brain fog. I don’t even know when it came on, and because my brain wasn’t functioning correctly it never even occurred to me that I might have brain fog.

January 2016 – September 2016 were some of the toughest months of my life and looking back on them I don’t even know how I did it. I guess it was just sheer perseverance. I was trying to work full time and failing. I was nursing a baby, waking up with him every night, pumping at work, and caring for a two-year-old.

You might be wondering where my husband was during all of this. Why didn’t he help me see that I wasn’t functioning? He was also working a full-time job, starting a side business, running all the errands, cooking almost all the meals, and taking care of me and the kids when he was home. He was also doing this all while being severely depressed. 2016 was a rough year for us.

I know my mom tried to tell me to take time off and my sister too but it was over the phone. Over the phone is not as powerful as someone sitting you down, looking you in the eyes and saying, “You need to stop and take care of yourself.” They might even say they are worried about you. After that, you might sit back and think about it.

But I didn’t have that, and I was determined to push on. This is where I made my mistake. I believe not taking the time I needed when I needed it only made my relapse worse and perhaps even prolonged it.

Sometimes an outside perspective and something visual is needed. I wish I’d had a way to see how bad I was or maybe have something that could have shown me. Something that would have figuratively slapped me in the face that said, “You’re not okay! Stop being stubborn and feeling guilty and get the help you need!”

I remember guilt being one of the biggest reasons I didn’t take the time I needed to get better. I had just been out of work for 3.5 months on maternity leave, and I felt guilty taking more time off especially during our busiest time of the year.

Instead of taking the necessary time off, I opted for an ADA accommodation. ADA accommodations are great but they are not very helpful if you’re barely functioning.

The truth is if I had taken the time off and taken care of myself, in the beginning, I would have helped my team out more than I actually did. With the combined fatigue and brain fog, not to mention sleep deprivation I was a lousy employee, and I almost got fired.

It was not a pretty situation at work.  It brought on A LOT of stress, and as you know stress does not help anyone and it makes symptoms worse regardless of your illness/condition.

I don’t want anyone to have to go through the experience I went through.

That’s why I have created this survey. I hope that if you rate how you’re doing on a scale of 1-10 for the questions below it will give you a clearer picture of how you’re stacking up.

I think if I’d seen a visual representation on how I was doing, it would have made me realize how bad off I really was.

I also think if I had this survey back when I was looking for assistance, I could have gone to HR knowing what I really needed. I wouldn’t have been swayed to try the ADA Accommodation which was not helpful because I was too sick at the time.

As a disclaimer, the survey below is for informational purposes only, such as aiding in discussions with your doctor about how you’re feeling.

However, the results of this survey do not guarantee that you will receive the benefits you need. That determination will be made by your disability insurance company or your employer with information received from you and your doctor.

I’ve tried to make the survey pretty general symptom wise. Answer the questions as you are feeling now and not what you think you’d feel like if you were to take time off or change the number of hours you’re working. If you think any questions should be added/changed I’d love to hear about them in the comments section below.

Answer the seven questions below. On a scale of 1 to 10 per the instructions below, input the number that best describes how you’re feeling right now.

1 = I’m so fatigued that I can’t get out of bed when my alarm goes off. I’m either missing work or coming in late a lot to 10 = No feeling of fatigue at all.
1 = I’m in so much pain I can’t move and/or concentrate when I’m at work to 10 = No pain at all.
1 = My job performance has declined considerably, so much so my boss has commented on it to 10 = My job performance is great. I’m doing just as well as I was before out.
1 = I’m so confused that I feel like I’m dumb and/or I’m extremely forgetful. This is not how I was before to 10 = My comprehension is the same as before I was out.
1 = I feel like I can’t focus on anything no matter how hard I try, and I find trying to focus to be extremely exhausting to 10 = My level of focus is the same before I left.
1 = My other symptoms are so active that they are interfering with my productivity at work to 10 = My other symptoms do not interfere with my productivity at work.
1 = I crash hard. I’m in the bed or on the couch unable to get up for the rest of the night. I cannot get up to heat up a food in the microwave. To 10 = I can do whatever I want. I have no physical limitations or fatigue.
1 = I have to rest all weekend. I can’t do anything else. To 10 = I can do whatever I want to. I have no physical limitations or fatigue.

Results

Disclaimer:

The information below are suggestions of whether your current working situation should be re-evaluated, and what those changes could be. Only you and your doctor can determine what your next steps should be.

The information below also does not guarantee that you will qualify for the suggested accommodations and/or benefits.

I’ve broken the results into four ranges. Click on the range that you fall in to go to your results.

Ranges:

Once you’ve reviewed your range, continue reading if you scored low in only one or two categories or if you’re skeptical about the results.

If your total is between 8 – 25:

I first would like to applaud you for even making it out of the house much less work!

Have you been missing a lot of work? Have you been going to work late a lot?

If yes, it’s worth re-evaluating your current work situation. You seem to be trying very hard with little to no results. You could even be making your symptoms worse and/or currently be in a relapse.

Talk to your doctor and Human Resources. If you do not have FMLA in place now is the time to get it, if you are eligible.

With a score this low, I suspect you are missing a lot of work. If so, you’re at the risk of getting behind at work if you’re not already. If this is the case then this could lead to poor performance, a poor review, or worse getting fired.

This is why you need a protection plan, such as FMLA, in place because it will protect your job while you’re feeling so unwell.

Ask HR about taking advantage of your disability benefits, if available. You may be eligible to go out on full or partial short-term disability. If you request part-time, be sure to check with HR on the elimination period.

Based on your score you most likely will need to take time off of work. If you’re hemming and hawing or coming up with reasons why you shouldn’t take time off, think about this:

  1. The sooner you take care of yourself the sooner you will probably feel better.
  2. If fatigue is one of your symptoms, pushing through it is only going to make your fatigue and other symptoms worse.
  3. You may be worse off than you think. If you suffer from brain fog, your brain may be too fatigued to tell you how sick you really are. (I know this from personal experience!)
  4. If you’re feeling guilty, DON’T. Your colleagues will make it work without you. Seriously, they will.

Now is the time to be honest with yourself and put your health first.

If you’re attempting to work full time, think about whether a part-time schedule would better suit you.

If you’re working part-time, depending on how many hours you’re working, decreasing hours may help or you may need to decide whether working at all is physically possible at this time.


ACTION
  • Review my guide to disability accommodations and benefits at work to see what time off options could be available to you through FMLA and short-term disability.
    • If you’re looking to take time off, read the sections on FMLA and short/long term disability.
  • Talk to HR about what accommodations and benefits are available to you at this time
  • Decide what disability benefits and/or accommodations you want to apply for.
  • Schedule an appointment with your doctor. Your doctor will need to have recent information about your condition if you’ll be applying for disability accommodations.
  • Do what you need to do to take care of yourself. No ifs, ands or buts!

If your total is between 26 – 45

If fatigue is one of your symptoms, I’m guessing you’re struggling to work your expected hours.

This is the category I would have fallen in if I had taken the survey 6 weeks after I went  back to work after maternity leave midst a relapse.

Have you been missing a lot of work? Have you been going to work late a lot?

If yes, it’s worth re-evaluating your current work situation. You seem to be trying very hard and depending on how sick you are you may be giving a lot of effort for less than stellar results. Is pushing yourself this hard worth risking your health? You could be making your symptoms worse and/or currently be in a relapse.

Talk to your doctor and Human Resources. If you do not have FMLA or an ADA Accommodation in place now is the time to get one or both, if you are eligible.

If you’re missing a lot of work, you’re at the risk of getting behind if you’re not already. If this is the case then this could lead to poor performance, a poor review, or worse getting fired.

This is why you need a protection plan, such as FMLA or an ADA accommodation, in place because it will help protect your job while you’re feeling unwell.

Ask HR about taking advantage of your disability benefits, if available. You may be eligible to go out on full or partial short-term disability. If you request part-time disability, be sure to check with HR on the elimination period.

Based on your score, and especially if you’re on the lower end of the range, think about what is going to help you the most right now. It may mean you need to take time off or cut back on your hours. If you’re hemming and hawing or coming up with reasons why you shouldn’t take time off, think about this:

  1. The sooner you take care of yourself the sooner you will probably feel better.
  2. If fatigue is one of your symptoms, pushing through it is only going to make your fatigue and other symptoms worse.
  3. You may be worse off than you think. If you suffer from brain fog, your brain may be too fatigued to tell you how sick you really are. (I know this from personal experience!)
  4. If you’re feeling guilty, DON’T. Your colleagues will make it work without you. Seriously, they will.

Now is the time to be honest with yourself and put your health first.

If you’re attempting to work full time, think about whether a part-time schedule would better suit you. Also, think what reasonable accommodations could help you be more successful in working the hours you need to or could help you be more productive.

If you’re already working part-time, depending on how many hours you’re working, decreasing hours may help or you may need to decide whether working at all is physically possible at this time.


ACTION
  • Review my guide to disability accommodations and benefits at work to see what time off options could be available to you through FMLA and short-term disability.
    • If you’re looking to take time off, pay special attention to the sections on FMLA and short/long term disability.
  • Check out the Job Accommodation Network to see what reasonable accommodations you could ask for through an ADA Accommodation.
  • Talk to HR about what accommodations and benefits are available to you at this time
  • Decide what disability benefits and/or accommodations you want to apply for.
  • Schedule an appointment with your doctor. Your doctor will need to have recent information about your condition if you’ll be applying for disability accommodations.
  • Do what you need to do to take care of yourself. No ifs, ands or buts!

If your total is between 46 – 65

This is the range I currently fall into and seem to have been stuck in for a long time.

I’m guessing you can function fairly well. By fairly well, I mean you may appear to function normally at work but once you get home you are forced to rest before you can do anything like cook/heat up dinner.

Or maybe you do present some symptoms throughout the day but they aren’t the worst  or the best they’ve ever been.

Some of you may be able to work full time in this category while others may not.

Be honest with yourself, do you need help in order to do your best work? If the answer is yes, then I encourage you to look into disability benefits and accommodations. Don’t suffer in silence. Let HR know!

If you’re struggling to work your full schedule, look into working part-time with FMLA and/or partial short-term disability.

If you have issues with flare ups or missing work from time to time because of your illness, look into the different types of leave FMLA covers.

If you’re working full time or part time but are still struggling with productivity, look to see if an ADA Accommodation could help.


ACTION
  • Check out my guide to disability accommodations and benefits at work to learn more about FMLA, ADA accommodations and disability leave.
  • Check out the Job Accommodation Network to see what reasonable accommodations you could ask for through an ADA Accommodation.
  • Talk to HR about what accommodations and benefits are available to you at this time
  • Decide what disability benefits and/or accommodations you want to apply for.
  • If you haven’t seen your doctor in a while, you may need to schedule an appointment with your doctor in order for them to fill out the paperwork.
  • Remember you don’t have to suffer in silence. Ask for help when you need it!

If your total is between 66 – 80

It appears that you’re feeling pretty well these days, or maybe you only have one or two areas where you’re suffering the most.

I’m assuming that everyone in this group can work full time. However, I know it’s not always easy working full time with a chronic illness and you may still need to do many things in moderation.

If you have symptom flare ups or brain fog that creeps in frequently, you may want to look into FMLA or an ADA Accommodation just to cover you in case you need it.

If you have a symptom(s) that are negatively affecting productivity look into whether you can get an ADA accommodation that could help that.

Since you are doing so well you may think that applying for these benefits and accommodations may be more hassle than it’s worth. I’m not going to lie, in some cases, it truly might be. However, if you are struggling with something it’s at least worth a conversation with HR.


ACTION
  • Review my guide to disability accommodations and benefits at work.
  • Check out the Job Accommodation Network to see what reasonable accommodations you could ask for through an ADA Accommodation.
  • Talk to HR about what accommodations and benefits are available to you at this time.
  • Decide if it’s worth pursuing an accommodation and/or benefit. If yes, decide what you’d like to apply for.
  • If you haven’t seen your doctor in a while, you may need to schedule an appointment with your doctor in order for them to fill out the paperwork.
  • Remember you don’t have to suffer in silence. Ask for help when you need it!
What if I scored Low in Only One or Two Categories?

Let’s say you only scored low on one or two categories but an 8 – 10 in the other categories. Or let’s suppose you feel fine up to a certain point in the day. For example, if you have brain fog but it’s not constant but when it comes on you realize you start making mistakes.

In situations like these, I recommend looking into an ADA accommodation or intermittent leave through FMLA. My guide to disability accommodations and benefits at work will give you the overview of each of these to help you to decide what option may be best for you.

Still not Convinced? Have a Loved One or Close Friend Take the Survey

Not convinced you’re doing as well or worse off as the survey says? Ask someone that knows you well to also take the survey on your behalf to see how well they think you’re doing. Are your results similar or different?

If they’re different, it’s worth a conversation to find out why. Sometimes it’s hard to see how bad we’re really doing or we’re not being honest with ourselves about how much we are struggling.

Recap

Now that you’ve read the results, what do you think? Do you need to get real with yourself or are you doing as well as you expected? Comment below or in our private Facebook group.

Here’s a recap of action items discussed above:

ACTION
  1. Take the survey
  2. Ask a loved one or close friend to also take the survey to see if you get similar or different results. If different, discuss why they think you’re better or worse than you think you are.
  3. Review my guide to disability accommodations and benefits at work.
    1. Low on time or brain capacity? Grab the FREE Disability Accommodations and Benefits at Work Cheat Sheet below.
  4. Check out the Job Accommodation Network to see what reasonable accommodations you could ask for through an ADA Accommodation.
  5. Talk to HR about what accommodations and benefits are available to you at this time
  6. Decide what accommodations and/or benefits you want to apply for.
  7. If you haven’t seen your doctor in a while, you may need to schedule an appointment with your doctor in order for him/her to fill out the paperwork.
  8. Remember:
    1. You don’t have to suffer in silence. Ask for help when you need it!
    2. Don’t feel guilty if you need to take time off to take care of yourself. Your colleagues will understand, and they will make it work.

Last but not least, did you find the survey helpful? Please comment below and let me know. Are there any questions you think I should add or delete? I want to make this as useful as possible for you. 🙂

Sara at Managing Chronic

Sara at Managing Chronic

Sara has worked in corporate America for almost 15 years, and she's worked the last eight years with FND. Her FND comes with paroxysmal dystonia, chronic fatigue, brain fog, sensory overload, muscle pain, and more. She is currently a part-time career woman, a mom and a wife.

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