How to balance chronic illness and work?

I hate this illness had it for 43 years had to give up my life sport of rugby league and working jobs it interferes with all things I do might be different these days cause there more about it theses days in the 70s there was not much said about it I started on the glass needles and had to put them in hot water over night to clean not much fun in them days .

Hello there, I’m unable to comment on the above article, as I have been retired for almost 7 years now. However I know that had I still been working, my manager would have probably sacked me very soon, as I still have big loo problems after my reversal, and although I worked for the Continence Advisor in North Kent NHS , she was a very strict and compassion less person, although having been a nightingale sister for several years, she cared very little for people, patients included, so she would have had no patience with me constantly running off to the loo. Actually I’ve bern wondering if you could advise me of any contacts I could speak to regarding my problems. The last colorectal nurse I spoke to last year just said, eat what you like, it doesn’t matter about the loo if your in all the time!  Afraid I didn’t find that helpful at all, as since the reversal in 2018, I’m afraid to go out at all, not even for a walk in case i have an accident. So lockdown hasn’t been anything new to me really, but I would eventually like to be able to go out sometime. I have to go to hospital appointments for heart investigations at the moment, but worry all the time in case I have an embarrassing accident. I’d be very grateful if you could suggest someone i could talk to.

by the way, I’ve had my first covid jab almost 3 weeks ago. 

Many thanks,

Sue Parker

Hi all

I suffer from diverticulitis with severe bouts of constipation and chronic diarrhoea that sometimes goes on for over a week, so I always need to be close to a bathroom all the time just in case it hits me so bad, I have to wear an adult diaper most of the time. With only one leg, I'm bound to use a wheelchair all of the time. The constipation can get so bad and the last bout I had lasted nine days and was like trying to pass a tree trunk. I was in total agony and blood everywhere from splitting my hemorrhoids.

I would not wish this disease on my worst enemy. I have suffered like this for the last six years and have to watch what I eat all the time. 

i had to retire  from my job as an electrical engineer  that id done for 40 years  due to my condition  

  Sorry all I’ve done is spoke to my diabetes nurse who did not really help me so now am 59 and still no wiser so back to the drawing board and find some other experience person to help sorry I could not help you yours gary

I never dreamt that being born with Epilepsy would change my life so much, eventually! I worked at 16 for my local borough council Planning Department! At 23, I left to have my eldest daughter with few complications. One year later I was expecting my 2nd daughter when Epilepsy took over my life! Seizure upon seizure whilst pregnant, so of course hospital and meds became my life for 30 years! My daughter was perfectly fine and for that I'm eternally grateful, 2 healthy daughters. My life beyond being a wife and Mam was on hold until I was 54 and had successful surgery! My point here is simply with a chronic illness there is no room for a career, in my instance anyway. There are  no employers out there interested in a 54 year old lady with only 6 years experience of employment on her CV. My joy is my family and the career my daughters have created for themselves, especially the 3 grandchildren they have provided myself and husband with.

Hi, I’m 50 and am diabetic and have chronic pancreatitis for 20 years +. I have discs out in my back and now a hiatus hernia giving me trouble.

up til recently I worked 3 jobs because I had to to survive. I’m on a covid payment for now. It gets me through. I’m about to start a new course as an SNA. Truthfully though I don’t know if I can work again. I’m in constant pain and I wake up every day in a deep dark depression. I get better as the day goes on but I live with the constant fear of dying, to the point where I’m obsessed by it. 

I have a wonderful 19 year old son whom I havnt seen for months over covid restrictions. All I want is too survive, be able to live, for him. 

Im a smart educated woman but I’m limited in work experience. I’m trying to start a new life in this climate and condition. I honestly don’t know if I can do it. 

All I want is to be here for my son as long as he needs me. 

Bottom line, I somehow have to become work able again and I really don’t know how to achieve that. 

As well as my diabetes I’ve had a kidney transplant in 2001 and still going strong but jobs are still hard to come and am not getting any younger 

@Parker similar situation, I was let go from my job of 8 years, since I was 18, because of my sickness rate, I was passing out every month on my walk to work and was causing me a lot of sickness days so they eventually couldn't keep me on. I have multiple conditions, underactive thyroid, chronic migraine, type 2 diabetes, polycystic ovarian syndrome, endometriosis and fibromyalgia. I fear I'll never be able to work again as I can't most days even manage the simplest of tasks like washing dishes. I'm currently awaiting my hearing date for my PIP appeal.

I would love to have read the article but I can’t get it to open. In regards to working with a long term condition...I’ve always worked...probably harder since diagnosis because I had to prove myself to employers...I’ve walked into the office half dead some days and carried on as normal despite feeling like death warmed up cos it was expected...taking sick days has always been considered as weakness by many employers. Many of my previous jobs had limited holiday allowance of just 20 days...I would easily use up more than half of that in order to attend hospital, GP, screenings, consultants appointments...and regular blood tests etc and that’s not even including dental appointments. I then found myself as a single parent with zero support from ex partner or family...I’m sad to say that something had to give...I stopped attending appointments...my health suffered as a result but the cost of childcare during school holidays was more than I could afford. I have to say I’m in a much better place these days...I now have 30 days holiday allowance, my daughter is now 27 with a family of her own...but I’m older and those years that I took my eye off the ball in regards to my condition has cost my health dearly so probably I still use more than half my holiday allowance to attend appointments...I’m constantly exhausted from dealing with my condition and general lack of any real time off.