How I Became Self Employed with Rheumatoid Arthritis

 

 

Starting My Little Business

 

Please note: this article is not meant to constitute professional financial or business advice. It’s my story with some useful links!

 

One day I was in the doctor’s for an intramuscular steroid injection. It so happens that as well as rheumatoid arthritis, I also have type 1 diabetes so steroids are complicated for me. The doctor told me to take the rest of the week off. I called into work and a colleague answered the phone. As my line manager was unavailable I told her the situation and she replied, ‘But you will be in on Friday, Eve. If you’re not here your project doesn’t run. We were talking about this the other day’. I wondered who ‘we’ referred to, and in what context my health was being discussed in my absence. Here I was facing a complex medical situation and feeling unwell, and this colleague was heaping extra stress onto me, not to mention guilt that my project would be disrupted and my clients inconvenienced. I had already taken one employer to tribunal for disability discrimination and I didn’t want to get into a fight, but it was hard to stay in an environment where I encountered this attitude. I had at the same time started teaching music for a community based music school. I enjoyed it and I felt I was good at it. Perhaps I could make a living that way? I would need help and advice, though. Anyway, everything was put on hold when my RA flared for about three years and I had to go from Northern Ireland to Bath for treatment at the Royal National Hospital for Rheumatic Diseases. When I came back my health was much improved, but after 30 job interviews no-one wanted to employ me although I had an extensive CV, a degree, 2 Master’s degrees and a quarter of a PHD. The jobcentre were not able to help much: they specialise more with people who have little to no qualifications. I saw 2 disability employment advisors from the Cedar Foundation, which is a great organisation but in my case they did not understand my sector and were not used to working with someone highly qualified. Unfortunately, one of these advisors tended to associate my RA with her OA and to ask such questions as why I couldn’t simply get steroid injections at the GP!!!! I’m not slagging off Cedar, it’s just in my case they weren’t able to help much.

 

After a year and a half of trying, I found some permitted work I could do on ESA. You are allowed to work up to 15 hours and earn £104 per week. My debts were ratcheting up and I needed the extra cash. This was at a music school where I was totally exploited. With a Master of Music degree I was sometimes paid £2 per half hour lesson, that £4 per hour being way below minimum wage (minimum wage does not apply to self employed people as it’s assumed they won’t charge beneath it!). That’s one of the pitfalls to look out for if you’re looking for permitted work or become self employed: some organisations offer all the risk of being self employed without the benefits, they will set your hours and your rate of pay, and as a disabled person unable to earn more than £104 you might end up feeling a right chump. So, why would I work under these conditions? I was going to set up in business for myself.

 

I found it very difficult to access information about this. Women in Business mentoring was very helpful, and I saw an advisor at Invest NI. I also consulted the magnificent EntreGuide and I picked up information on everything from accounting to social media marketing. There were also useful organisations in the field of music (I ended up with a publishing deal as well as teaching music), so look out for advice available in your own sector.

 

 

The Benefits Trap

 

It was a difficult thing to move from ESA to self employment. I faced financial uncertainty. I was starting to have the opportunity of more work coming in but the £104 per week limit was a problem: you’re either on ESA or off it. You can’t up your hours while decreasing your benefits. I chatted to the helpful souls at Disability Action’s benefits advisory service. They told me I might be eligible for tax credits. You can check whether you are eligible for tax credits here. You could get up to £360 per month depending on your circumstances which is not a scary leap from £430ish of support group ESA. I also got a back to work grant of £100 to help me in the first month off benefits.

 

The other scary benefits issue is that if you have used your National Insurance contributions on an ESA claim and you stop claiming ESA, you will lose those contributions and have to build them back up again so if you have a bad flare or a joint replacement that could be a problem. I have tried to find out if it is possible to make voluntary national insurance contributions but HMRC couldn’t tell me the last time I phoned and the accountants I asked didn’t know. Self employed people pay class 2 national insurance contributions (just over £2 per week) and class 4 once your earnings reach a certain level (£8060 annual profit). More info here.

 

DLA and PIP is not affected by earnings so no need to worry about that one.

 

By the way, whether you are doing permitted work in a self employed capacity or hoping to become self employed full time (which for disabled people means more than 20 hours per week) you must register with HMRC and do an online self assessment annual even if you haven’t made enough money to pay tax.

 

 

Going Back to Study

 

In order to pursue my new career, I needed to undertake some further study. Nobody would help me with this financially although I did a great deal of research into grants etc. It’s a bit sad that this is the case because many disabled people could work, just not in their former fields. I could get help with my disability needs from the local Education and Library Board, though. They can provide a Disabled Students Allowance to pay for equipment etc. As far as I know it doesn’t cover fees.

 

 

If you’re thinking of giving it a go….

 

Five years on and I’m living the dream. I’ve never been so happy in my working life and my business is growing.

 

If any of this has made self employment seem like a possibility (or indeed an impossibility), to sum up I’d like to go through the main advantages and difficulties I have experienced as a self employed person with complex medical issues. For people without medical issues some of this may be relevant, too:

 

 

Advantages

 

  • I can attend my myriad hospital appointments without worrying
  • I can set my timetable to suit the ebbs and flows of my RA during the day
  • I can rest when I need to
  • I do something that I love
  • I have more confidence as a member of the workforce than I would not working
  • I am more socially active now I have my own business
  • I am financially better off than I would be on benefits
  • I can say no to things that I know would tire me or stress my joints. Technically you should be able to do this as an employee, but in my experience this is not always the case
  • I have learned new skills

 

Difficulties

  • Self employment will never be as secure as a salaried post
  • It takes time to have a decent amount of income coming in when you set up a business
  • There is the risk of exploitation from some organisations who offer the risks of self employment without the benefits (see above). Be careful which opportunities you take.
  • You can end up working 24 hours a day of you’re not careful! It’s important to timetable in rest periods and not too take on too much work.
  • Some opportunities simply don’t work out and that can be demoralising.
  • Lack of sick pay could be an issue (see section on National insurance).
  • There will inevitable be a lot of news skills to learn and information to acquire, e.g. accounting, marketing. This is both a pro and a con!

 

I don’t claim to be an employment advisor, but if you would like to chat email me or leave a comment below.

 

Useful Links

 

Disabled Entrepreneurs

National Rheumatoid Arthritis Society

Access to Work NI

 

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