Can You *Actually* Work with a Chronic Illness? | Make & Manage💲as a Patient #1? | Let's Talk IBD

I'd like to talk about being on disability. It's forced poverty. I don't get enough to even pay my basic bills, especially considering my medical expenses. I try to hustle to make other money but I'm exhausted. And I know I'm one flare away from everything crashing down.

Having several chronic illness makes me feel like useless human sometimes. Not strong enough to work 8 hours of work, not passionate enough to complete many projects,etc. It is always challenge but we shouldn't give up, so yeah we should pool our ideas and resources together and help each other. Thank you for sharing and inviting others for this discussion.

This is so relevant for me right now... I didn't start to get sick until my mid to late 20s, when I had already completed my bachelors and masters degrees and found a good job in my chosen field, and I had no plan in place for if I were to get sick. Over the course of 3 to 4 years, my life as I previously knew it disintegrated, and I've been on leave for six months now (I was very lucky that the job provided disability insurance) in an attempt to get myself able to work again. I'm having to re-evaluate my life and I'm realizing that I'm not sure that I can ever back to doing that job, and I may have to give up my career and (hopefully) find a job that I can do. For anyone reading this who is or has gone through something like this, all of the hugs! We're going to get through this

Oh Gawd yes...please do a series about surviving financially while chronically ill. That is something I havent seen anyone else doing in the YouTube space. (If anyone knows of someone who already is; then please do share)! Thanks!!❤❤❤❤❤❤

We definitely need more discussions on the financial plight of those of us with chronic conditions, especially “invisible illnesses”. I have a Eustachian tube disorder and vestibular migraine condition (both stemming from a viral infection, apparently) which affects my hearing, vision and balance. There’s always a baseline, but it’s made much worse by the use of computers and lights that flicker (such as fluorescents). If you were to see me on the street, you’d probably not think anything is wrong with me. People don’t understand why I’m exhausted after a few hours of computer work, but can ride a bike for a few hours with little problem. I’m of the impression that I have little hope of ever qualifying for disability, so I’m limited to working part time. I just wish I could find something apart from computer work that paid well.

I'd love to hear about that. Making ends meet while being chronically ill is soooooo hard! Thank you for talking about this

I'm coming late to this thread, but i echo what many others have said. This is an essential discussion for the community. I've been immunocompromised for 41 years and have gone through all the stages: working, not working, working again, went back to school, working again, and finally being forced onto disability and retirement. Keep up the videos as you are able. T's and P's for all of us who struggle.

YES, YES, YES - I would love this series. Working OR being on disability was such a tough decision. I need to figure out what I can do to make money… just found your channel tonight. I’m excited to watch more vids.

This hits in so many ways. I’m financially strapped after having a medically mistake by a doctor that almost took my life. But in that blink of a moment my whole life was shattered. Lost my career and everything I had in order to even make it this far and now it’s getting worse and worse. I’ve tried to sell items that I make but haven’t found a good avenue for getting my things seen as most would be made to order and being sick and hooked to IV poles and feeding and drain tubes, visual loss to legal blind doesn’t get my out of house to even do craft fairs and things. How I spend every day fighting red tape, insurance and medical professionals to get what I need in an affordable way to stay alive. Especially fighting for life and being a single parent. It can be a lot and very daunting day in and day out.

Your idea for a new series is excellent. It would be so valuable for people living with chronic illness AND or a disability. I love your matter-of-fact manner. You go "girl"!

I’m a nurse too and my fibromyalgia cut that short thankfully here in uk my health is free and thankfully I didn’t need to work as my kids are all adults but it did change our lifestyle

Maggie, you’ve been a life saver for me recently. I’ve been dealing some painful rectal/anal issues (have an appointment with doc tomorrow). I’ve been binge watching your videos, because it feels like having a friend who understands what you are going through. I am thankful that I have flexibility to work from home with my job while managing my health. I empathize with anyone dealing with chronic illness who must be in the workplace to do their job or must be on their feet moving all day, especially if they are dealing with severe rectal/anal pain. Thank you for everything Maggie, you are a blessing to so many ❤

I just found your channel and what you said about nursing really hit me. I am an OR nurse and i really love it. I have a rare chronic disease that affects my energy level at work unfortunately. I am happy that i live in Sweden with universal healthcare and have regular contact with my neurologist and eye doctors. The last year I have been admitted to hospital, done MRI, lumbar punction, lots of blood work and numerous tests at eye department. I probably paid less than 200-300 dollars for all of my visits and medication. I feel so lucky that I live in a country with nationwide universal healthcare. I only work 80 procent now because of my illness and I do not do certain surgeries because of my illness. But on the other hand, I am able to have a better life outside of my job. Subscribed,

I would also love to see more videos about the financial burden that chronic illness patients experience and what are the financial support options available, what kind of jobs, mostly jobs that can be done from home, are available for us. I have multiple chronic illnesses, the main ones being MS and CFS. Few years ago, when the extreme fatigue was too much, I was forced to quit my job as a research lab manager. Since then, I’m unemployed and on disability. My income doesn’t cover the bills, and my health is so unpredictable that I’m struggling to see how I could make money on the side or have a job in the future. I think it’s important to have discussions on that topic. Thanks for bringing it up and I’m looking forward for more videos on that, if you’re able to.

I'm actually recovering from MECFS slowly and want to be a doctor. I'm going to drag myself through medical school even if it requires a wheelchair. But I agree that work is very difficult for most people with chronic illness and managing it is really hard. I'm pouring basically my entire life and resources into getting better and I know that I'm incredibly lucky because not everyone will experience the kind of remission that I'm experiencing.

Hi Maggie, I hope you and Zak are doing well. I am 56 have been dealing with Crohn's since 1989 I had 4 surgeries I 1992 on botched bowel resection and was fairly lucky to have several years without pain. Another surgery in 2012. But in 2020 they did a total proctocolectomy and I have not been able to come back from this one. I have had to go on disability and Medicare doesn't start until April. My 12 year old son was diagnosed in July of last year of Crohn's, so anything dealing with finance would be wonderful. Thank you for what you do. When I first got my ostomy I was lost. The ostomy nurse I had in the hospital had really didn't know what she was doing, plus my surgery was during the pandemic so they really didn't spend time with you. What you do is truly appreciated. God Bless

Hey Maggie, yes 💯 a series of videos on this topic would be fantastic! I’m single, in my 50’s, work full time, live alone & unfortunately my parents and my only sister have all passed. If I don’t push thru the pain every day I will be homeless. I have severe diverticulosis which resulted in a colostomy last year. My supplies aren’t covered which sucks. I also have hyperthyroidism that I can’t treat and C3 squamous cell carcinoma vulvar cancer that I’m also not treating because I simply can’t take the kind of time off work required to address it. There are so many people out there like me who can’t do all the copayments, deductibles etc in addition to being absent from work. And I don’t think there are nearly enough resources for us. It would be so helpful to hear what ideas and experiences everyone has! I hope you end up doing this, thank you so much! ❤

Maggie, great suggestion for a video series. I have Crohn's. I was diagnosed at age 47 but had symptoms a long time beforehand. I worked for 32 years as an auditor. In 2010, I had surgery where a lot of my small intestine was removed as well as about .5 feet of my colon. Surgery was the best thing I could have done. I felt like I could work forever. I gradually had more fatigue, abdominal pain, and other symptoms. I was on Humira, then Entyvio. Lots of diarrhea. Thankfully, I worked in an office where my supervisors were not located. They had no idea how much time I was in the bathroom. In January 2018, I became eligible for taking retirement from my employer. I was so fatigued all the time and did not have the energy to carry my laptop, printer, etc, that I needed for our audits in the field. I needed to be near bathrooms while working in the field. It had become too much to handle, so I retired. I was 54 years old. I was not eligible for Social Security, so my income was cut to 60% of what I was earning while at work. My wife is also chronically ill. My income and my health insurance were very important to us as she is on Social Security Disability. Now it's 2023. My 60th birthday is this July. I'm still not eligible for regular Social Security for a few years. Inflation is going crazy, the house is not paid off, and credit card balances are maxed out. Medical expenses are killing us. My crohns is active, and I was hospitalized just before Christmas because of a blockage. I'm still waiting for that bill. I have applied for SSDI, but I expect to be denied and have to appeal it. My doctors both agree I should apply for it. To help with our cash flow now, we decided to apply for credit card debt relief. It will kill our credit rating, but the only other choice is bankruptcy. I hate doing this, but our medical expenses and inflation are killing us.

It’s great to hear how you were able to work on the same nursing unit after you were a patient there & you were able to help the kids with their ostomies! I’m sure they loved all the advice & assistance you could give them! I once worked w/ a fellow RN who had spina bifida (& could walk with braces or use w/c). She was so instrumental with our patients who had spina bifida - they really loved her & it was so cool to see them progress in their independence bc of her encouragement. It’s really encouraging to me when nurses are able to use their health challenges to help their patients! I’m sad you weren’t able to continue in that job, but I know you have helped many here, including me! I watch your videos whenever I have a patient with an ostomy & have questions, especially bc I don’t get those patients often. Thanks for all the ostomy education & for all that you do here!

Maggie, thank you for your videos please keep them up! I’m a lot older when I had my surgery. I was in my 40’s and it just seemed like all of a sudden I was having to go to the bathroom 10-15 times a day and actually sleeping with the toilet! Went to the doctor and they did everything scopes included! They told me I had “pan ulcerative colitis “. I was on every medicine known to man in 2010. Went into remission a couple of times but then it was not going to remission at all. So went to my surgeon and they scheduled me for a total colectomy with jpouch. That lasted for 6 months but I started getting infections one after another. So then it was discussed about the proctocolectomy. I agreed , it’s been 4 years with the bag I’m so grearful! But it is hard to work sometimes , thank goodness it’s a 8-5 job and I sit most of the time. I am unable to lift heavy things but got laid off on 1/3/2023. Maybe I should work remotely?? Again thank you for your video’s LOVE THEM!!!!