Advice for Finding Work with Chronic Illness

#1) conditions are not always permanently disabling. My CF started at 29. Took its toll for 4 years. 3 years without being able to work. POTS here currently but seeing light, hopefully seeing the end of the tunnel. As for jobs, there are still a lot of remote jobs. My job went remote with the pandemic, but stayed remote with doctors cert. The ADA form is not legally binding, but worked for me. I love it. Working from home gives fulfillment that i wouldnt otherwise had. Obviously provides needed income. I am zble to start early so should i have a "good day", i have the possibility of enjoying it. And crashing when it doesnt work out.

I had to quit my physical job as well. I am now working from home, which gives me the ability to lay down or sit how I need to. I can take meds when I need to and use a heating pad. I highly recommend looking for a work from home job!! Best of luck :)

I hear you and deeply empathize with you. You are lucky that so many jobs have gone remote so that you can work from home. Things like call centers, appointment schedulers, or sales (if you can handle that kind of work, unlike my sensitive and introverted butt) are all options so long as they can be flexible. Another option if you are open-minded and bold is working a phone sex line. You only take the calls you want, work when you want, and usually, the better you get, the more you are paid. It can be (and probably should be for safety reasons) completely unanimous, you set your own boundaries and comfort level. If I haven’t lost you - and I truly hope I haven’t - there’s something important I need to add here. You had to quit a physically demanding job because of your conditions. No shame in that whatsoever. Good on you for recognizing your body’s needs ❤️ However, that activity was likely keeping you at a certain level of ability whether you realize it or not. What I mean is that without replacing the physical work with some type of exercise or regular physical therapy, you will easily decondition into a more disabled state. You are young and in my experience that means you have a better chance of putting at least your POTS symptoms in some form of remission. That’s not to say it’s a certainty, but having better odds are always helpful to one’s psyche, no? TL:DR; Get a WFH job with flexible hours and don’t forget to exercise or do regular physical therapy so you don’t decondition. All the best of luck, my friend ❤️ 🙌

I just started a stay at home job last week and it's been amazing. I have flexibility so I can go to appointments or take naps while still making 40 hours a week. I feel your frustrations, you can do this! 💕

Thank you so much 💕I appreciate your words of experience and empathy.

I can completely empathize with you. I too have all of your conditions and know how dibilitating it can be. I was able to work for many of my younger years until my condition progressed in my late 30s and I began working at home. I found this the only way I could work. I had to be able to work a very flexible schedule when I was able to focus without headaches or brain fog, and had the flexibility to be able to frequently stand, stretch, lie down to ice or heat sore muscles and joints, etc. Or when needed work in the middle of the night when I didn't feel up to work during the day. This worked well for some time and I also benefitted by being able to get fresh air and morning sunshine by working outside in the morning hours which I always found to be energizing as well as frequent short breaks just to walk outside for a few minutes. These days post COVID there are many companies that have realized that many positions can be productively worked from home which benefits the company as well as the employees. This gives people like us who simply would not be able to work a Mon to Fri 8 to 5 office desk job an opportunity to earn a living, be productive, be self sufficient, maintain our self esteem and help to fight depression by feeling we have a purpose when we wake up every day. It is so important to do this as long as you can, in my opinion. I eventually had to stop working recently and had a difficult time adjusting. Not just to the income differential but to knowing how to feel productive and fight depression. No matter what life style we have I believe it is important to have structure and balance in our lives. We must find time to make sure we get proper rest, get our exercise/stretch, meal plan/preparation/proper👍 nutrition, meet our social and family time needs, have fun, meet spiritual needs, and enjoy some sort of hobby or enjoyable activity. Sometimes when we do t have a structured work schedule and must actually schedule our activities I find I get lax and don't schedule my other activities and think they are just going to happen and find that I actually get less done and are less productive and because I don't manage my time as well. It is very easy for this to happen and then everything gets "out of whack", pain gets worse, sleep gets poor, diet gets lax, and before I know it I am very "POTSY", experiencing gastric paresis, chronic headaches, severe joint pain and feel like I can't get out of bed for days. Absolutely horrible! While this can happen anytime, I find it happens less if I find the time to truly try to balance everything and overdue NOTHING! Not knowing what field you have been working in it is difficult to direct you to a specific job. However there are many options for work from home depending on your skill sets or interest. You may also want to work a part time job somewhere for the social aspect and to get out of the house a few days a week and then another part time from home which has flexible hours. I have a very good friend who has a chronic pain issue who does proof reading of court documents and court transcripts. She can work any hours she wishes and as much or little as she wants. This works out very well for her as she can only sit for limited time and often is unable to work usual business hours so works nights and weekends or when she is feeling well and able to be at her desk and do the work. This works beautifully for her situation and she is able to be self sufficient by doing this. I suggest you do a sear6on work from home careers and see what careers come up that may interest you and you think may fit your situation. Good luck!