Working with a Heart Disorder

By ashleylovie Latest Reply 2015-01-31 17:26:45 -0600
Started 2011-09-28 04:22:50 -0500

I've been putting off this post for quite a while…I'm not exactly sure why. I guess that I feel a bit selfish. I don't want anyone to think that I feel "entitled" to special treatment because of my disorder, but on the other hand, I'm extremely interested in everyone's experiences. I've (luckily and gratefully) worked for my fiance's family's company since leaving my last job after being diagnosed with 2nd degree heart block. They lovingly hired me knowing that my disorder lead to frequent panic attacks and doctor appointments. Everything has progressed perfectly, and I was promoted to a very good position over the years. Not too long ago, my disorder was upgraded to complete block. Since then, the doctor appointments have increased tremendously and my frequent missed or half days have seemed to push some buttons. Now, I should take the time to explain my personal belief. Please take into consideration that this belief is purely from my own experiences and shouldn't be compared to your own. I believe that it's very difficult for normal, healthy people to TRULY understand a person with a medical disorder…no matter how many times you describe your feelings, symptoms or general thoughts. After the original diagnosis, everyone was understandably sympathetic but after a while they seemed to…sort of accept it. It seems that unless you have a cosmetic or physical abnormality, it's hard for them to remember what you go through in your head on a daily (or in my case, constant) basis. So back to my question, what are your experiences with your heart disorders/diseases and your career? I personally experience extreme fatigue and dizziness all day, everyday. From time to time, the fatigue seems to build up so much that I can't even get out of bed. Then I'm stuck missing a day of work. Even my fiance (who I've been with for just about 10 years) forgets and accuses me of being lazy when I miss work. I just can't seem to correctly explain that feeling to anyone…but that just goes back to my previous belief statement. Please share your experiences! I'd love to know that I'm not the only one that feels this way!!!

20 replies

polina123 2015-01-31 17:26:45 -0600 Report

like you i be beat when i get of work so your not alone in this the same experience your having i get too and i do have a very understanding boss if i try to do something in lifing anything she tells me to watch myself or say you know your not to left anthing heavy you have heart trouble. so thats a good thing there i have a good boss.but being tired all the time is taking a tole on me getting out of bed in the morning and getting dress for work is not easy anymore i just want to craw back to bed and stay there my body is just shutting down one day at a time my joints are just to hard to move anymore

dotwiggs 2011-11-10 15:03:32 -0600 Report

Hello, I can relate to your condition and completely understand what you are going through. I was born with a complete aventricular heart block, an apparently uncommon occurance. My heart has never beat more than 30bpm alone. I have had 4 pacemakers and I am not even 30 yet. Last year I went into heart failure (class 3) and received a bi-ventricular pacer and tons of medicine to boot. I too am struggling right now on whether I should continue working or if I should push for disability and stay home. I wish more people understood how I feel everyday and the kind of strength it takes to keep going. I have a wonderful job and work for a great company, but just like you said if they dont see it they forget. My boss is very understanding about my condition, but I try not to let it affect my work. The catch is I also have two children 5 & 7 that I have to take care of and by the time I get home from work I am so wiped out all I want to do is sit. Heart disease is an awful condition that never gets better, only worse. I dont care what people or doctors say, in my 30 yrs experience I have never gone to see my cardiologist only for him to say "good news your heart is better" no it is always the same "well your heart has weakened a little or we need to make a few adjustments" I have to wonder how long a heart can be mechanically paced before it says sorry I'm done. I'm hoping its at least another 30 years!

LennyDenny 2011-10-31 13:12:36 -0500 Report

You are totally right, out of sight out of mind. Most people do tend to forget that we have physical disorders. I had a heart attack 6 years ago and have coronary artery disease, I have 4 stents in different arteries. I also have athsma and emphysema which only complicate things more. I am a Safety Director. I have had many of the same reponses that others have had, everybody forgets that there are just some things I can't do. The company has been great and has alway been willing to work with me when it comes to dr. appointments or hospital stays. There are day I just can't do anything so I either stay at home or only work part days. But your right, unless they are going through the same things they just don't understand. So we take care of ourselves and hopefully they will understand. We can only be there for each other.

jobe66 2011-10-29 09:00:05 -0500 Report

i agree 100, for most people, after a while if they cant see it then it must not be that bad, or we dont have it. i really dont think people can understand it completely unless their one of us. your not being selfish at all, i think we all feel like that from time to time. thats one of the things i feel blessed about in finding this site. we can talk about and express things to friends who truley understand. thank you for this post because i feel this way sometimes too.

redorangedog 2011-10-28 19:03:34 -0500 Report

Redorangedog, "To thine own-self be true." You must take care of yourself, no one can feel your pain or even imagine what it takes for you to brave the storm. You are the only one that knows how much you have to push your self to get up out of bed in the morning and put on your clothes, take your meds and make the trip to work and proceed to do your job. So many healthy people take for granted what it is like for someone with a chronic disease which also comes with it's own form of depression to overcome the obstacles that their body must make to have a somewhat normal looking type of life. You do not have to please anyone but yourself. And, I have found the tendency to over achieve to compensate for the restraints of a chronic disease has placed upon me. You can not control what other people think nor should you care. When you are alone suffering from your disease no one can feel what you are feeling. Do what is good for you. You need not keep up with the athletes of this world. There is no justice in this realm.

tinman101 2011-10-25 21:49:21 -0500 Report

I was forced into early retirement, doctor would not sign a statement letting me go back to work. Retirement is not all it is cracked up to be. I would go back to work today if they would let me. I go to rehab 3 times a week, a social worker for depression every 2 weeks,

redorangedog 2011-10-27 18:06:44 -0500 Report

Redorandedog, Yes I agree, being forced to retire is a major blow to a person's identity. But, you are not you job. Any chronic disease can cause depression. It is helpful to have someone to talk to about it. By any chance are you a veteran? I thought your hat looked like a hat I saw at the VA hospital store. My husband and I decided to relax and use our retirement to try to get healthy from all those 12 hour shifts and job stressors we endured for most of our lives. And to do all the things that our jobs prevented us from doing. We could not remember the last time we were able to have a date with each other, due to being on call from our jobs. Now, we can enjoy birding, planting flowers, walking with each other and visiting people and places we always wanted to visit but could not because of the old punch clock. If you let yourself relax and enjoy the moment you will want to do it again and again. At this time in your life your role changes, go with the flow and discover what these golden years are all about. Good Luck and G-d Bless

HeartHawk 2011-10-25 22:18:10 -0500 Report


Congrats on tackling all the issues surrounding heart disease head on. You may not be able to do your original job but there a lot of things you can do right from your home. Work that angle as hard as your rehab and you will be OK. It's all about learning to adapt. Yeah, I know, it's not easy but when your back is against the wall there is only one direction to go - forward!


Te Ja
Te Ja 2011-09-30 12:40:29 -0500 Report

I am blessed to have had the same job for almost 20 years now. I am albe to come and go as needed for all of Drs appts. test, and whatever else that may need to be done. One time I was out of work for eight weeks and I only had 3 weeks paid leave the owner paid me all eight weeks that I was out. They know I have bad days and I'm not very productive but when feeling well I give them 110%.
For my family they are just as understanding especially my husband of 18 years he knows there are days that I can take on the world and there are days I can't even get out of my own tracks.
Still there are times where I to feel all alone that no one understands the pain or triedness I am feeling. I'm so greatful for being part of HC, whether having a good day or bad one happy or sad, there are so many friends that come forward with encouraging words or hugs and flowers. It is a place where you can truly feel the peolpe completely understand how you feel or what you are going through.
Sorry Ashley I hope I didn't go off track on your post.

ashleylovie 2011-10-03 19:39:38 -0500 Report

No! You didn't go off track at all! And I completely agree with you on the support and encouragement that HC offers. It's a godsend!! I'm happy that you have such a supportive boss and husband…that's like hitting the jackpot! ha My fiance is extremely supportive so I understand that there are times when he calls me "lazy" or whatever, that he just doesn't think before he speaks. I try to act as normal as possible, so it's easy for people to forget about my disease. My HR actually dropped down to 32bpm's last night and I went into work feeling as if I'd not slept at all. I had actually slept from 12:30am Saturday night to 6:30pm Sunday…woke up to eat something and fell back asleep at 10pm until this morning…so I knew that something was up. When I called in my monitor recordings at around 9am, they informed me of my low HR and put in a call to my electrophys. My boss and fiance we totally fine with me going home early…thank god! I just hate having to ask in the first place. I was diagnosed with anxiety/panic disorder about 6 years ago, so I always think that they assume it's simply that…if that makes any sense!! My cardiologist/electrophysiologist and I agreed to put off the pacemaker surgery until my symptoms got extreme because of my age, but I'm about ready to have it done now. I don't think I can handle anymore of these symptoms! I hope you're doing well and having a great day! xoxo

HeartHawk 2011-09-28 22:54:13 -0500 Report

ashley and cherokee,

I think you have hit the nail on the head. What is out of site is out of mind. Since I have the luxury of working for myself (my boss is a jerk, lol) the problem is less severe for me.

But, I spent 3 hours in the ER today dehydrated and with a blood sugar of 50. I was on my way to an appointment with a major client and basically had to call and tell them I was too sick to come in. Problem is, all they want are results and if I can't get the job done they go elsewhere. I'm not part of a company team, just another vendor who is replaceable.

The bottom-line is, yes, it can be rough. The world is not going to cut us any slack! Of course, that is why we have this community - a place where people do understand as well as a place to commiserate and soak up a little well-deserved TLC!!

I think all things considered we are stronger for the experience despite the setbacks and heartaches!


P.S. Whenever I think I have it bad I watch this video. It puts everything into perspective.

ashleylovie 2011-10-01 13:09:21 -0500 Report

Hi HH!
"What is out of sight is out of mind"! THAT IS THE EXACT PHRASE THAT I'VE RACKING MY BRAIN FOR!!!! Thank you for that! I'm sorry to hear about your recent ER visit and I hope you're doing well. You're right, the world can DEFINITELY be rough and it's MOST DEFINITELY not going to cut us any slack, which is why I'm trying to take on the "buck-up girl!" attitude the best that I can. Every once in a while, I find myself with a depressed outlook but I have to make myself focus on the positive things in my life. It could be a lot worse…it can ALWAYS be worse. My issue with my work situation is that I'm a person who likes to give my all + more. I know people constantly say to never work with family or friends…which I've done many many times and for the most part they've been right. Not that you shouldn't work with loved ones because you'll end up killing each other, but because sometimes you end up killing yourself trying to please them or not let them down…which is where I come from. I hate that feeling I get when I tell my (soon to be!) father-in-law that I have another Dr's appointment…regardless of his response…which is 99% positive. Thank you for your response and encouraging words! I can always expect that from you!!! Hope you're feeling better!!

HeartHawk 2011-10-01 23:35:13 -0500 Report


Thanks, feeling great. Like you probably do, I sometimes push myself too hard. You should have seen the "Are you dumb or something?" looks I got from the docs when they started asking the following questions at 3PM in the ER.

Doc: What time did you wake up today?
Me: 6AM.
Doc: What time did you go to bed?
Me: 1AM.
Doc: When was the last time you had something to eat?
Me: 9PM yesterday.
Doc: When was the last time you had something to drink?
Me: 6AM this morning.
Doc: what did you drink?
Me: A can of diet soda.
Doc: Well, there is a cure for the low blood pressure, dehydration, and low blood sugar your experiencing - it's called eating drinking, and sleeping, dummy!

Well, OK, the didn't really say "dummy" but the sentiment came through loud and clear.

Having the ability to focus has always been my strength but sometines it is to the exclusion of everything else - like eating drinking and sleeping, lol! But, I know what you mean, you always want to perform at a high level and be recognized as a top performer. Let me know if you discover the secret to achieving the proper balance. It's darn hard!


ashleylovie 2011-10-03 19:42:24 -0500 Report

haha I was cracking up at your conversation with the ER doc!! That is too funny(!!) and definitely something that I know all too well about!! I haven't had any luck finding the secret to proper balance(YET!) but the second that I do, you'll be at the top of my "must tell" list!!

HeartHawk 2011-10-03 22:16:34 -0500 Report


Best of luck! At 56 I have studied a lot, done a lot, been through a lot, made consumer health a profession and STILL haven't come up with the answer. Best advice I can offer is to take a few risks, trust your gut, learn from your mistakes, and keep on keepin' on!

HeartConnect is just one more path on the road to discovery!


cherokeeBlonde 2011-09-28 14:55:38 -0500 Report

Hi wow can I relate, and you just said it all. I so agree as you can see by my photo it does not appear on the outside that I have such a serious conditon, but hell I have battery operated since i was 12 years old and through the years I have worked in some great places. my last job working at applied materiials in silicon valley was awesome but than i was fired after 2 years for mssing to much work that is when I chose to go on disabililty with all the unexpected appts or emergency visits its hard to keep a job, and it hurts like hell when the ones who say they love you cant seem to understand how I feel inside its living with everyday not knowing if I have tomorrow and I always try and keep a great outlook and do good most of the time.I have noticed through the years and 3 marriiages that after about 7 years in a relationship things change they begin to just act different and they seem to get tired of dealing with the crap I go through and yet no one seems to understand that what I go through every single day of my life. I feel so alone at times there have been times that i have just wanted to give up. and dont care no more. i have so many different problems with my heart. but it seems no one does really understand that it is my who lives with daily they can get tired of it I can not. anyhow I just want to say good for you and you are not selfish and please do what makes you feel best cuz I dont care what anyone says it seems everyone gets tired of dealing with health issues of someone elses eventually than you only have you. I am sorry it seems im a bit negative at the moment I guess I am. I have lost my dad, mom, grandma my daughter, and really no family left., and even though I have a great ol man it seems it beginning to get to him now to. and so im just feeling alone. God Bless you and hope the best for you. and yes no one ever understands unless it what you have to live with.

ije 2012-02-11 00:47:59 -0600 Report

try to join this heart club or something like mended heart association and others. this are people who have on heart issue or the other. am going to their meeting this February. find out more groups on this site. they share their experiences, encourage others, and … bye. take heart. u need friend's , good ones around you, like this and other groups.

HeartHawk 2012-02-11 23:08:46 -0600 Report


Looks like you are finding your way around. Thanks for all the input! Haven't seen Ashley around in a while but she had A LOT going on in her life. Maybe we can prod her to give us all an update when things settle down!


ashleylovie 2011-10-01 12:59:06 -0500 Report

Hi Cherokee,

I'm very sorry to hear about everything you've been through. But like HH said above, "you're experiences only make you stronger" and I believe that you are who you are today because of those experiences. I too feel alone quite often, but that's why I'm SO HAPPY to have found HC. This site has helped me in more ways than I can count. I'm so grateful to have found a community that is so caring and quick to help…and we're all strangers! But because others can't always understand what we're feeling from time to time, this community shares a unspoken and instant closeness and connection. Whenever you feel alone or like you want to give up, come here and write a post or send someone a message. I guarantee that you'll receive a response that puts a smile on your face. Please feel free to private message me anytime…honestly ANYTIME. I'd be happy to talk and/or share stories or even exchange numbers if you need a texting buddy! Stay strong girl, you owe it to yourself!! xo