Hello. I wanted to get a good idea of what everyone has experienced with working. I work Full- Time, from 8am to 5pm. I have a 15 month son so I'm usually up with him around 6am and down for sleep around 9/10ish pm. I have the worse time getting up but once I'm up, I'm up. Around 1pm I am absolutely drained. I have the boss from H-E-double hockey stick! She has gone as far as "writing me up" because I called in too much for her. At that point she was unaware of everything I was going through, so that is when I had my doctor send her just a letter of explanation. Still and yet when I'm having a bad day, sick day and have to call in or go home early; she is so rude along with other bosses in the dept. Mind you, I've been at this company almost 6 years, 4 years before I was diagnosed. I am only 29, and as much as I would love to put all the energy I do into my son I'm nervous about not working for awhile. My Mom (who is a Fibromyalgia patient) thinks I should just take a break from work for a few years, learn how to deal with what my body is doing, learn what works and what doesn't work, etc.
So my question is, did anyone else have to stop or break from working because of Sjogren's? Do you have any advice?
I am not sure where you live but you are covered by Americans with Disabilities Act. Sending them a letter from your md is not enough. You need to go to your HR and do it officially using a letter from your md. This protects you from attempts to suspend you or discipline you for absences due to health.
Once you have done that you can approach HR about the way you are treated and hopefully the tables will turn. Behavior like theirs is unprofessional and immature. I have been there with a supervisor who made my life miserable and she was ordered to back off. I took early retirement because of another medical issue.
I now work part time and in a different job where I am treated better. They are considerate of my health issues.
I know it’s not easy. You are fatigued from work and parenting demands and now a job with inconsiderate people. I hope everything works out for you.
I did turn the letter into HR, the worse part about the whole situation is you would think HR would back you up. After speaking with the HR manager about the way I'm being treated, it got better for a few weeks but then back to the same. Its strange because this is a family owned business, been around 80 years but when it comes to illnesses of any sort, they do not treat the employees like family. For instance when I told my boss I was expecting with my son, her exact words were "so this means you'll be taking a lot of time off". I'm in California. I won't be treated anyway because I have an illness so I will continue to fight in professional manor. Thank You Cassi440 for your words
There are so very many things to consider with a move such as your mom suggests. From a health perspective, it is not a bad recommendation, but from re-entering the work force aspect, it could get sticky. You must also carefully consider health insurance concerns, you need to get all of the good advice you possibly can.
Dear kay. I worked full time while going through diagnosis and was so ill. I finally had to go on CA state disability I have a 12 year old and am a single parent. We had to cut back but my health is worth it especially since my health has gotten worse. I have been at my job for 19 years. I am still off trying to take care of my health.
Hi Kay!
I am actually 28 years old, and have the same issue. I did now take time for myself, to heal and get my disease somewhat under control, but it is hard. Be strong and do whats best for you.
While employers can’t “legally” discriminate against you, there are MANY ways that they can and will discriminate in"other" ways. I have had to be very careful and hide my identity and location as a result. I have witnessed this happen to others and I am careful that this does not happen to me. Sad but true. This has meant that I have not been able to honestly share my illness with others nor seek help or understanding from bosses. I have to be careful not to reveal too much on this board or on the other that I am active lest someone identify me. I am home recuperating from a major surgery for my T.N. and no one even knows why I’m not at work, just that I got really sick. Luckily I have 3 close friends at work who know my condition and that helps. Both of my Drs have told me I need to leave on Permanent Disability but I love my job and we can not afford for me to go on Disability. So I hide it because where I work it would be the end of my career if my diagnosis was discovered.
I'm a Life Coach and I was able to take a year off (I had a nest egg so I had no money worries for that year); you are the only one who knows your financial situation. Your mom is a wise woman and if you can take time off or cut down (especially if you can work virtually) that would be great; your biggest problem might be with your boss, who isn't very empathetic, but I imagine that just adds to the stressors in your life, so not having her in your face or in your ear on a daily basis would bring some much needed peace and tranquility, plus more time with your son. If you were my client I would ask "what do you want?" and proceed from there.
I was so grateful for having the time off, to wrap my mind around my body "turning" on me and all the doctors I had to visit was so time consuming!! Now, I do all of my Coaching sessions via Skype or phone, unless they are local, but most of my clients are in Latin America and Europe; I cut my schedule in half and only work from Monday to Thursday and make Friday MINE, I do whatever I want on that day, it's just for me! Remember be good to yourself.
I hope that helped and I wish you courage, strength, peace,
Hi Kay, I'm sorry to hear that you're struggling to juggle all the balls you have in the air at once, the attitudes of your bosses certainly makes things hard. The last thing you need right now is more stress, when you're trying to understand your condition and manage it. The other contributors have given advice better than I would have been able to, as I only know my own experience of having to leave the work force. I hope that if you do feel that a break from working is the best option for you, your time off will help your health, and you'll be able to start again feeling refreshed.
Hi Kay, I'm sorry to hear that you're struggling to juggle all the balls you have in the air at once, the attitudes of your bosses certainly makes things hard. The last thing you need right now is more stress, when you're trying to understand your condition and manage it. The other contributors have given advice better than I would have been able to, as I only know my own experience of having to leave the work force. I hope that if you do feel that a break from working is the best option for you, your time off will help your health, and you'll be able to start again feeling refreshed.
Be good to you. You are the only one that knows what you really need. This was a very difficult decision for me as a business owner of 22 years. But my life was on a downward cycle not getting better until I learned the proper tools my body could accept from me physically, emotionally with stress and I had to surrender control. This was very difficult for me as I had NEVER asked for help from anyone in my life. I was the Mom, the daughter, the Boss, the Wife, the everything. So Ihad to take a break, learn how to listen to my body. I could not do that full gear. It took a few good months of therapy and listening to me, asking for help and setting health boundaries with the people I love in my life. (by saying no sometimes) I am finding my life to be a lot more peaceful which gives me more energy. I also know factually that I MUST get 8 full hours of sleep or I am setting myself up for failure. I must stick to a gluten free diet to control the inflammation for me. I must stay hydrated, use my restasis twice a day for my eyes and take my medicines prescribed appropriately. If I am consistent, I have way less bad days. I can feel a cycle coming on HARD and know to check my list of things I am not doing and start back ASAP.I have two other autoimmune diseases that depend on ME being Good to ME! I am so very sorry that your current company does not value you as the beautiful gift God gave us. You deserved to be valued, and important and be treated with compassion. Stay true to you. Sit to the quiet and ask yourself what you really would do if you were going to take care of your son. I bet you would know exactly what to you. May HUGS. We are all in this life to hold hands together, You are not alone my friend XO
Friendhere said:
lilacs said:
Hi Kay, I'm sorry to hear that you're struggling to juggle all the balls you have in the air at once, the attitudes of your bosses certainly makes things hard. The last thing you need right now is more stress, when you're trying to understand your condition and manage it. The other contributors have given advice better than I would have been able to, as I only know my own experience of having to leave the work force. I hope that if you do feel that a break from working is the best option for you, your time off will help your health, and you'll be able to start again feeling refreshed.
Kay, I've worked full time for well over 50 years. My Sjogrens diagnosis is very recent.
I have never had much energy. I push myself constantly. I still work full time. Everyday at lunch, after I eat, I go to my car put the seat down and close my eyes. Some times I doze off. It helps me get through the afternoon. Some of my co-workers made fun of me, but I now see others doing the same thing.
You have a young child, and it's important to be the best Mom you can be. Maybe you should try to work part-time.
Hi Kay! I am actually 28 years old, and have the same issue. I did now take time for myself, to heal and get my disease somewhat under control, but it is hard. Be strong and do whats best for you.
I can understand. Hiding it seemed to be what I wanted to do at 1st but it didn't work out that way
TL said:
While employers can't "legally" discriminate against you, there are MANY ways that they can and will discriminate in"other" ways. I have had to be very careful and hide my identity and location as a result. I have witnessed this happen to others and I am careful that this does not happen to me. Sad but true. This has meant that I have not been able to honestly share my illness with others nor seek help or understanding from bosses. I have to be careful not to reveal too much on this board or on the other that I am active lest someone identify me. I am home recuperating from a major surgery for my T.N. and no one even knows why I'm not at work, just that I got really sick. Luckily I have 3 close friends at work who know my condition and that helps. Both of my Drs have told me I need to leave on Permanent Disability but I love my job and we can not afford for me to go on Disability. So I hide it because where I work it would be the end of my career if my diagnosis was discovered.
Thank you!!! I've love nothing more than to work from home. I love working, I love being successful but yes our health comes 1st. Maybe finding a job that is home based would be a good idea for me, for now
SGoddess said:
Hi Kay,
I'm a Life Coach and I was able to take a year off (I had a nest egg so I had no money worries for that year); you are the only one who knows your financial situation. Your mom is a wise woman and if you can take time off or cut down (especially if you can work virtually) that would be great; your biggest problem might be with your boss, who isn't very empathetic, but I imagine that just adds to the stressors in your life, so not having her in your face or in your ear on a daily basis would bring some much needed peace and tranquility, plus more time with your son. If you were my client I would ask "what do you want?" and proceed from there.
I was so grateful for having the time off, to wrap my mind around my body "turning" on me and all the doctors I had to visit was so time consuming!! Now, I do all of my Coaching sessions via Skype or phone, unless they are local, but most of my clients are in Latin America and Europe; I cut my schedule in half and only work from Monday to Thursday and make Friday MINE, I do whatever I want on that day, it's just for me! Remember be good to yourself.
I hope that helped and I wish you courage, strength, peace,
hey connie. I have definitely done that a few times, one time I actually fell asleep so deep that a co-worker came looking for me.
Connie said:
Kay, I've worked full time for well over 50 years. My Sjogrens diagnosis is very recent.
I have never had much energy. I push myself constantly. I still work full time. Everyday at lunch, after I eat, I go to my car put the seat down and close my eyes. Some times I doze off. It helps me get through the afternoon. Some of my co-workers made fun of me, but I now see others doing the same thing.
You have a young child, and it's important to be the best Mom you can be. Maybe you should try to work part-time.
Thank You to everyone. The words from everyone make so much sense and I am SO grateful I found this group. I have so many emotions, and they change day to day. I have an amazing support system (family) and I can openly talk to them about everything but sometimes talking to strangers that know exactly what your going through is better. Thank You again.
I work full time, and I have FMLA (Family Medical Leave Act) which should be offered through Human Resources where you work. You can get FMLA on an intermittent basis to use when you need to be out, and it’s related to your Sjogrens. That way it can’t be counted against you. So look into intermittent FMLA. I hope this helps! Best wishes and good health to you!
Oh okay got it. I was under the impression you would only receive FMLA if you weren't working
Kayrn said:
I work full time, and I have FMLA (Family Medical Leave Act) which should be offered through Human Resources where you work. You can get FMLA on an intermittent basis to use when you need to be out, and it's related to your Sjogrens. That way it can't be counted against you. So look into intermittent FMLA. I hope this helps! Best wishes and good health to you!
I worked full time until about a month ago when I was downsized out of my job of 27 years. I was very lucky to have a job that allowed me to work from my home because I was supporting global projects. This meant I started my day very early..between 5 and 6 a.m. I would work a few hours then take a rest break...then work a few more hours. Some days I didn't need that midday rest...other days I needed more than one.
I was very lucky to be in this role for the last 4 years which was the beginning of my diagnosis. I admit that I am a bit worried about what the next job will look like because I'm not so sure that a standard "9 to 5" is going to work for my health. Luckily, I am able to take a couple of months right now to just focus on me before I begin the job search again. It's been a month since I stopped working and already I am feeling better. I am able to focus on my diet and exercise...and I have gotten more rest than I've had in a long time.
Probably worth mentioning that my kids are in college so I don't have the busy life that you do with young ones. I can't imagine how I would have ever worked with my health like this and my kids younger. I still have bad days, but they are fewer and don't last as long because I just stop.
You will get lots of advice about whether or not you should stop working, but only you know if it is doable. FInances are always a big part of this kind of decision and if that is true for you I encourage you to look at how you can remove that item from the decision process. (i.e. downsize your expenses, savings on medical costs, day care, etc.) It's tough, but even with college tuition we are making it work. Downsizing our expenses also means less stress, which I think is helping my health as well.