Life has less meaning without work, but most work would make me sick

Hoopoe

Hoopoe

Senior Member (Voting Rights)
I wanted to describe my current situation and am hoping for some useful advice.

I don't think that I can reliably work more than 2 hours per day without sacrificing an unacceptable amount of quality of life.

I never completed high school because of the illness and am now 40. I considered trying to finish it but it doesn't seem to be a good use of my time and energy when I won't fit into university and especially normal work life. I'm working on getting a driver's license because that is actually useful. I'm still dreaming of high education and doing something useful for society but I'll probably have to accept that there are too many obstacles in the way.

I have spent too much time in front of the PC and don't want to work towards some IT related work-from-home job for this reason. Otherwise it would be ideal as I'm a technical oriented person.

I find it very difficult to do something that I don't like doing, but when I do like it, I tend to get absorbed by it. I find putting on a friendly social mask very draining so customer-facing jobs are a poor fit.

There are almost no disability-friendly job offers in my area.

I contacted an employment center 6 months ago but never heard back. There are no patient associations for people with my diagnoses offering advice. I have considered asking a MS patient organization.

I don't think I can do well in a competitive and cruel job market. I fear that my only chance at meaningful work is to find a benevolent mentor that finds meaning in training a disabled person, or to somehow create a job for myself. Neither of these seem very realistic.

I don't know what to do. My creativity and mind want to be used.
 
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I’m not sure how much I can help or give advice and can see the challenge but maybe some more questions will help?

What are you looking for? A sense of achievement? Structure? Interaction with others? Money? Opportunity to learn?
Are you comfortable trying new things out? How about if they don’t pan out or fail?
Do you want someone else organising and directing what you do or are you happy leading and organising yourself?

There may not be any simple answers and you’ve obviously thought about this a lot already. And I can see why you fell on creating a job yourself or finding a benevolent mentor as solutions.
 
hotblack said:
What are you looking for? A sense of achievement? Structure? Interaction with others? Money? Opportunity to learn?
Are you comfortable trying new things out? How about if they don’t pan out or fail?
Do you want someone else organising and directing what you do or are you happy leading and organising yourself?
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A bit of everything, in order of importance. A sense of purpose, knowing that I'm doing something to make the world better. Money to increase my quality of life. Being part of a group. Learning new things.

I don't know what achieving something professionally feels like and I would like to find out.

I would feel comfortable trying new things out of I feel that the environment is accepting and the job is compatible with me.

I don't mind leading and organizing myself in other areas of life, but don't have the experience yet to do that in a work context.
 
Hoopoe said:
I wanted to describe my current situation and am hoping for some useful advice.
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Hi Hoopoe! Going straight into paid work from your situation would be a big step, and possibly quite a difficult one. As a first and easier step, have you thought about looking for a volunteer role suited to your skills and interests, in a charity or NGO that does something that you care about? It needn't even be a local one, if it's work you can do from home.

You could get in touch with some and describe your skillset (or even say you're just interested in what they do and would like to find out what they need that you might be able to help with, even if you don't have training in it already). If you got the gig, it would be good experience for if you wanted to move into paid work. You'd have got a sense of what you do and don't like doing, you'd have gained useful experience and would maybe have upskilled on the job, you'd be able to get a reference for future employers, and there might even be a future opening in the organisation that you could apply for.

It needn't be forever but could be a valuable and rewarding experience in itself, and a stepping stone to paid work.
 
Sasha said:
Hi Hoopoe! Going straight into paid work from your situation would be a big step, and possibly quite a difficult one. As a first and easier step, have you thought about looking for a volunteer role suited to your skills and interests, in a charity or NGO
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After my experience with the man nearly dying from an allergic reactions, I thought about doing something in the medical emergency response, but that requires a training course and being available for service for an entire shift and also doing night shifts. Not compatible with me.

There was a police association where they do things like regulating trafic in front of schools and during sport events. It didn't sound interesting and possibly very tiring. The people there were all old.

Animal shelter or proving company for elder lonely people is also a possibility but it doesn't spark my interest.

I realize that a part of my problem is that I'm going by imagination and have no real world experience in anything. Not too long ago, taking a bus and visiting a shopping center was stressful and hard for me.

I think I also want something that allows me to meet people of my age.
 
It would probably be difficult to find a situation that pays (at least initially), but this was how I started out in research. I reached out to a local research group and asked if they would be willing to take on an intern for a few hours a week. I had a knack for teaching myself coding, so I ended up restructuring their data collection for an ongoing study, and then did some basic statistical analysis using some of their existing data that eventually got published.

In principal I would know several investigators who would be happy to arrange something informal. Free labor is a hard thing to turn down--it really just depends on whether they have someone on staff that would have time to train you/supervise you. A lot of times they're already doing this for high schoolers or MDs who want research experience but only have 4-8 free hours a week.

There are plenty of things that would be helpful in a research context, whether that's data analysis done on a computer or getting trained to do a bit of wet lab grunt work running gels and assays. The people doing this work usually have high school/college degrees because they're students, but it's not strictly necessary. None of the undergrad interns who have taken intro statistics classes know how to do an actual analysis when they first start out anyways.

If this idea interests you and you happen to live near a university (or can find someone for whom remote work would be feasible) I think there is no harm in sending an email to a PI proposing an "internship" or volunteer work situation. It would probably just take some perseverance on your part since researchers are notoriously bad at answering emails.
 
Hoopoe said:
After my experience with the man nearly dying from an allergic reactions, I thought about doing something in the medical emergency response, but that requires a training course and being available for service for an entire shift and also doing night shifts. Not compatible with me.
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Would it interest you to do something that supports that response instead? Worth reaching out to your local hospital volunteers unit to ask about it?
Hoopoe said:
There was a police association where they do things like regulating trafic in front of schools and during sport events. It didn't sound interesting and possibly very tiring. The people there were all old.

Animal shelter or proving company for elder lonely people is also a possibility but it doesn't spark my interest.
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What's important is to start from what interests you, and reach out to organisations in that area that might have room for someone to help on a voluntary basis, even if they're not advertising for volunteers. You'd basically be creating your own opportunity, if necessary, as @jnmaciuch describes above.

Incidentally, political parties will take your arm off if you offer to volunteer, and they often have social events because they know people like them and that it's a good way to bring people in to do the things they need. You could meet people of all ages there, if politics float your boat.
 
Hoopoe said:
I liked programming because it rewards being thoughtful and precise and allowed me to build things and be creative.
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All sorts of organisations would probably welcome someone who can programme. But if you really don't want to do that, there'll be other things you can do. Are there particular issues or causes that you care about or that interest you? The key to finding fulfilling work is figuring out where your interests and skils intersect.
 
Hoopoe said:
I'm still dreaming of high education and doing something useful for society but I'll probably have to accept that there are too many obstacles in the way.
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I may not be able to offer any practical advice but the first thing I would say is that:

1. S4ME is at least as good and in many respects five times better than any university course.
2. As @Hoopoe on S4ME you have already done more useful things by asking questions, raising issues and giving your viewpoint a hundred times over than most scientific researchers achieve in a lifetime. S4ME is for me at least as worthwhile a project as anything I have ever been involved in before and you are a stalwart here. We may not be being paid but that is another issue. We may not all have our names on breakthrough papers, but some of the members here will.
3. I am serious about that.

Whether, like jnmaciuch, you can find a way to make an interest in medical science a formal job I don't know. There are all sorts of ways to be involved, including data handling and searching, but I really know nothing about the market these days.

Just be reassured that you are already being useful.
 
Jonathan Edwards said:
Just be reassured that you are already being useful.
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Indeed. The forum wouldn't exist without you and people like you contributing.
It also occurred to me that there are jobs on the forum that we need more volunteers to help with, so if that's of interest, do contact a committee member.

If programming is something you enjoy, there are plenty of free online resources for improving your skills and small organisations who would love to have a volunteer to help set up and/or run their websites or apps, and can't afford to pay the high rates of commercial web and app design companies.
 
Jonathan Edwards said:
1. S4ME is at least as good and in many respects five times better than any university course.
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The desire to cultivate critical thinking here is very valuable and I can say that it really changed me as a person.

A few weeks ago I had a conversation with a psychology student who was taught that when many studies find the same result, it means that it has been proven by science. I could only think of systematic bias and how widespread misleading research methods can be.

She had also been taught that a positive attitude improves odds of survival in cancer and was disturbed when I disagreed with that. It's very hard to be flexible in one's thinking and use critical thinking.

My intuition tells me that, while I missed out on a lot of things due to the illness and have fallen behind in many areas, in some specific areas I have so much experience that I must surpass the average person by a wide margin. The whole experience of falling ill, with all its dysfunction and shattered illusions has taught me things.
 
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