Arthritis since I was 3 - The job dilemma

Jonny1991 · 13. Jun 2014, 10:18

I wasn't sure whether to put this in working matters or the under 25's area. I decided to put it here as it may be something others here have had the same problem with.

Hi everyone! I've suffered from Rheumatoid Arthritis since before I can remember. I'm now 23 years old and have developed multiple auto-immune illnesses including Crohn's and PSC. Here's a brief back-story.

I'm currently at a high-point in life - An advantage of developing these illnesses at a young age (If any) is that you create your life around it, instead of it putting the brakes on a life already planned. With that, you become accustomed to every day life and don't have a healthy life to really compare it to - Just times of pain vs. times of less pain.

I'm currently studying Fine Art and Professional Practice at Blackpool & The Fylde college. My illnesses have created issues but have never halted my progress, and my foundation course in 2012-2013 went very smoothly everything considered. I had to take a month out in Christmas 2012 due to a major flare up which knocked me back severely, but very understanding tutors kept me going.

I've now finished my first year of University and am in what I'd like to call a "High point". I met my girlfriend in University and she's very supportive, helping out around the house and being overall a perfect and supportive relationship. This took a lot of pressure off of me as I struggled to do house work and education at the same time.

Ever since I was little I've been on benefits to help my parents out with costs of transport and costs of care, and we made several changes to the house for my sake. Going on to the usual first-job age, I was too ill to work and was diagnosed with PSC at 17, putting me out of commission for essentially a good 4-5 years. I had to leave sixth form and felt like I had no hope for a good future.

Fast forward to today, I'm in a position where my illnesses are in total remission. I started Remicade for my arthritis, started my driving lessons and am managing University with some difficulty - However, I feel like I've become "Trapped" by my benefits, and this is where the dilemma comes in.

So weighing it up, the choice is between two majors - Keep the benefits, don't overwork myself and make sure I have the money to keep myself going through University or get a job, have a completely unreliable income that may end if my illnesses come back into light and risk losing my benefits.

Now, this is a decision I myself have to make, but it's something that a lot of young people will go through. Like anyone with illnesses who hasn't had a normal life - Now that I've tasted normal life to an extent, I really want to see it. Coming to terms with not having a normal life is a huge part of having an illness, made even more difficult by the traps put in place by our government and their right to totally rip our benefits away if they deem us "Fit for work" by their standards (aka the standards of a normal, perfectly fit human being).

Crippling pain is a normal part of daily life for a sufferer of arthritis. Fatigue in itself is a symptom I would not want any person to suffer, and we live through it day in and day out. I want to put a friendly message down to all of those in positions similar to mine and all of those who are losing their hopes and dreams to keep on going and make the most of life. In the end, it's highly unlikely that I'd end up in a terribly position taking on a job, and I definitely feel unfit for it, but my desire for a taste of life keeps me going hoping that one day, I can take it on and hopefully succeed.

stickywicket · 14. Jun 2014, 07:33

Hello Jonny and welcome to the forum. You have a lot going on there (I'd never even heard of PSC and had to look it up) and seem to be doing a great job of handling it all. My RA started at 15 though more likely at 11 when I had what they then thought was rheumatic fever. Before that I had asthma so I was used to not quite doing all that others do. I love your take on it ('An advantage of developing these illnesses at a young age (If any) is that you create your life around it, instead of it putting the brakes on a life already planned') in seeing the positive side of arthritis.

As for your moral dilemma – I also like the fact that you recognise it as such. I think many would just take the money and run. You don't say which benefits you get or what you are currently capable of so it's impossible for any of us to judge.

It's lovely that you are in remission with the remicade but I wonder how much remission and for how long. RA does wax and wane, sometimes due to the meds and sometimes due to other factors (The post-pregnancy flare is at least one you're unlikely to suffer from

) You say life is much easier now that your lovely girlfriend helps with the housework. That sounds to me as if you would still find it a big struggle without her.

The trouble with being used to ill-health is that our definition of good-health is a bit different from that of our fitter fellows. My husband considers his knee is bad if he can't play a full 18 holes of golf. I, on the other hand, would feel I was doing exceptionally well if I could manage a full round of Crazy Golf with one of our grandsons. It's all relative and, as you're so steeped in it, I'm not sure you're the best person to judge. Why not ask your consultant(s) and GP for an opinion? None of them can tell you how long this good spell is likely to last but they might be able to answer a few questions such as 'How long, on average, does remicade work for?' (In my experience of anti-rheumatic meds nothing is forever.) 'How long is it likely that the Crohns and PSC will remain under control?' You can also ask yourself how long your best times have lasted in the past; how long before finish your degree and enter the job's market. (That will be a big one.)

I wish you every success with both your career and your life. I'm 68 now and consider I've had a very good one. I hope you do too

charleeh · 8. Sep 2014, 22:05

Hi Jonny,

I have had a very similar dilemma to you with regard to work.

Got diagnosed when I was 17 (am now 24), I had to give up my place in a well renowned college to study conservation to be a park ranger (which is what all my voluntary work had worked towards) and I studied business and finance. I had another major flare and nearly failed the business as I couldn't physically get to college nor even type on a laptop. I even had scribes for exams. I lost my job I had whist studding (working in the chippy, I used to work nights after college) as I couldn't stand or hold anything.

After a while, my disease settled long enough for me to pick up my studies again - so I went back into finance and studied accountancy. (mine never went into remission, it just was 'under control').

I got a job as a receptionist part time while I was at college which was ok until I had to give it up as I wasn't well enough to get on 2 buses as the standing up was too painful.

I got a job in accountancy as an accounts junior and my employer was paying for my degree ACCA at Kaplan (private business college) - but I found working a 40 hour week and studying 2 evenings a week way too much and when I went to talk to my boss about it they told me it was tough. In addition they failed to provide me with any adaptations I had asked for (I need a flat keyboard and a ergonomic mouse). On top of this there was a discrepancy with my pay. I ended up having the worst flare up I have ever had and it has only settled down this year. (that ordeal was 3 years ago).

I had to drop my degree and won't even consider picking it up again as I know I cannot physically manage that job. It is too much on my hands. I lost my job and was backed into a corner by my employer to go through a solicitor and sign a compromise agreement.

I have recently gone self employed as I know that I can manage my own work load and make sure I can look after myself!

The point I am making is please look for a good employer; I know the current job market is tough but with a health condition you need to be selective; make sure you pick a fair employer. And also don't push yourself if you do go into work, it is so important to look after yourself - you only have one body and over doing it at work took me a 3 year recovery - and now I couldn't do a normal job thats why I have gone self employed. My wrists have fused after being swollen for so long so I have lost a lot of the use of my hands.

As for the benefits, when I stopped work I was told that I hadn't 'paid enough in' to get ESA having worked part time through college since 16 and then for a year on a 40 hour week. so they just credited my national insurance which I thought was terrible. I felt like no one cared and I was just left where others have paid in less than me but never worked and got the benefit.
You can get DLA or PIP while you work, I get mine (well until they make the decision changing it over to PIP I have been waiting since January for a decision! they might decide I should have it yet) and I am self employed and it does not affect the benefit.
Also I think you can get top ups to pay rent if you are on a low wage (although this does not apply for me so don't know much more).
Some councils don't ask you to pay council tax if you get DLA or PIP but you'd have to look into that.

I think it's important to find work to help you 'stay in the real world' if you know what I mean but it is essential you find a good employer. Not many people understand the auto immune diseases and everything that goes with them.
I know I have been refused employment due to my illness, which is against the law but who enforces those laws? It is difficult to get a job with an auto immune disease but it is by no means impossible. Some employers might look at it and see its a dead cert you'd be sick a lot of the time. I would recommend seeking employment within a large company as the discrimination laws don't apply to a lot of small businesses.

You would think that there would be more help for people in our situation from the government in helping us find sustainable work. I found the benefit office very rude to me when I wanted to cancel my ESA national insurance credit, the operator spoke to me like trash and laughed at me down the phone. I was only asking what the rules of re-applying were incase I have a flare up and can't work for myself to which they rudely replied "I will not advise you, go to citizens advice". To which I calmly said if you listened to me I was asking what the rules are and it is your job to tell me not citizens advice...... I should have complained, but then again I have to pay for the call! I was treated by the operator like that I could 'make my mind up to be ill' - he never said that but thats how he came across to my call.

If you are still at Uni can you apply for work experience placements? It might give you an idea of the workload on your body in different jobs you might want to look for??

I hope you get on ok!

best of Luck,

Charleeh x

Arthritis since I was 3 - The job dilemma

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