Is anyone with ET on disability?

[Zeppelin11]

My Dr said that in the next 5 years he is going to suggest that I go on disability. He has mentioned this before however I just can't imagine not working. I own a Photography business and have been running it full time for 13 years. Its a creative outlet that I'm very lucky to have. I do have days when I'm overwhelmed because of the fatigue, but when I'm out in the field I forget about it. Its only when I get home that it tends to hit me. I guess its a balancing act and maybe I can just scale back my workload. Curious if anyone else can relate.

[EPguy]

I can relate well to being distracted by an engaging activity. It's a great if fleeting cure for all that MPN ails.

In my opinion you'd be nuts to quit working if you're enjoying it and feel well enough to keep at it. Besides I assume it's better financially. Is there something unusual in your ET Dx that prompted Dr to say this?

[hunter5582]

It really depends on your symptom burden with ET and to what degree you can manage it. I have had a MPN for 30 years, ET that progressed to PV. I worked full time until I retired after 31 years. I still work part-time even though I do not have to. I enjoy the work and it keeps my mind engaged. I am fortunate that I never encountered any fatigue until I was too iron deficient from the therapeutic phlebotomies. This resolved when I changed my treatment to the interferons.

We are all different in how our MPN presents. Fatigue can be a major problem for some. Some find that the fatigue improves with proper treatment, but not all.

I think what matters most here is what your treatment goals are. If continuing to work at a job that you love is a high priority goal, then that is a primary goal for your treatment plan. You can work with your care team to achieve that goal.

Wishing you all the best.

[jmctrek]

This is a question on my mind also but I haven’t explored it because I find part time work to be what I need to actively engage my mind and body to avoid a preoccupation with my condition. Would be curious to know the impetus if you do decide to go on disability.

[JediReject]

Hello Zeppelin 11, , when diagnosed with PMF many years ago I had to give up work due to high levels of fatigue and some physical limitations. This kind of mourning my loss of my working life along with some of the unknown around my MF nearly drove me insane as i had too much time to dwell upon it.

Believe me there is only so much daytime tv, cups of tea and pottering about one can stomach. How I wished I had a job or a skill to fall back on like yours which enabled me to do something productive to pay the bills. Sadly my business required alot of physical effort and no small amount of ladder work and it was impossible to continue doing it.

I would say aim to carry on doing the job you love and skilled in as long as you possibly can because your mental health plays a vital part in managing your ET and it sounds like it's a big part of your coping strategy. Potentially you have many years of productive work ahead of you and I hope you can carry on way beyond your Docs projected 5 years.

Regards - Chris



[Plavers]

Dear Zeppelin I’m a 72 years old Actor with ET and I’m still working. I’ve just been on a 6 month long Theatre tour of the U.K. (with Patrick Duffy - Dallas & Linda Purl - Happy Days) and in the last 6 weeks a tour of Norfolk & Suffolk acting with my Wife, in a lovely play together. When I got my diagnosis our children wanted me to Retire and ‘do something I loved doing’ - BUT THAT’S WHAT I’M DOING! Keep on doing what you love doing and don’t let anyone, even with the best intentions deflect you from something that gladdens your heart. Yes I get tired and have ‘lazy’ days but I always look forward to doing what I love. Carry on, carrying on. Every good wish to you.