Living with a chronic illness is not a pretty subject to discuss. But health conditions, whether physical or mental, should be a subject openly discussed to reduce stigma, raise awareness and open up opportunities of allyship for those within chronic illness communities. Hopefully this guide to freelancing and self-employment with a chronic illness will help those conversations.

Many people choose to work for themselves as it offers greater flexibility. But how can you successfully manage freelancing and self-employment with a chronic illness.

It's important that physical and mental health conditions are discussed openly to reduce stigma and raise awareness. And any self-employed professionals are able to find the support and advice to help them in their careers, and in managing their conditions to live their best life possible.

One of the biggest issues is that many chronic conditions aren't immediately visible to other people. As someone living with a chronic illness, I often look 'well' even when struggling internally with mental and physical issues. Every day I have a certain amount of spoons to spend (units of energy), and when my spoons are all used up. I either suffer from extreme fatigue or need to force myself to use spoon reserves from the following day.

Not looking “sick” is a common concern for those with a chronic illness - we’re often told “but you don’t look sick” - which can result in feeling anywhere from disheartened to anger and frustration.

A chronic illness is defined, by the NHS, as:

• A health problem that requires ongoing management over a period of years or decades
• One that cannot currently be cured but can be controlled with the use of medication and/or other therapies.

This encompasses a wide range of health conditions including the following:

• Non-communicable diseases (e.g. cancer and cardiovascular disease)
• Communicable diseases (e.g. Human Immunodeficiency Virus (HIV) / Acquired Immunodeficiency Syndrome (AIDS)
• Certain mental disorders (e.g. schizophrenia, depression)
• Ongoing impairments in structure (e.g. blindness, joint disorders).

Examples of chronic illness conditions can include:

• Diabetes
• Cardiovascular (e.g. Hypertension, Angina)
• Chronic Respiratory (e.g. Asthma, Chronic Obstructive Pulmonary Disease (COPD))
• Chronic Neurological (e.g. Multiple Sclerosis)
• Chronic Pain (e.g. Arthritis)
• Other Long Term Conditions (e.g. Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), Cancer) etc.

And according to CISFA, the chronic illness support group, “chronic illness is a collective term for conditions generally lasting longer than a period of six months. Long-term mental health conditions are also included.”

Yes, you read that right - conditions lasting six months or more. Which means a person needs to be exhibiting symptoms for at least six months before they’re able to receive a diagnosis of a chronic illness. And during that time, a chronic illness can impact every part of someone's life.

You may receive discrimination, feel you’re not taken seriously, feel you are losing your dignity and independence, and become at risk of social isolation and mental health deterioration through stress and anxiety.

With ME/CFS (chronic fatigue syndrome), fibromyalgia and Crohn’s Disease, I regularly have a cocktail of symptoms and side effects from medications to manage on a daily basis. This ranges from brain fog and memory problems to fatigue, joint pain, and mental health issues, all of which are frequent concerns.

Whilst the impact chronic disease has on a person’s life can be measured in terms of how debilitating and severe the condition is, there is no one size fits all chronic illness “box,” making chronic illness symptoms hard to define. And often chronic illnesses have no cure and are lifelong conditions that need managing through medication, lifestyle changes, therapies and procedures.

Flexibility

The flexibility of times, hours and days worked are without a doubt a huge advantage of being self-employed with a chronic illness. I can work when I have energy, take time off when I feel lousy or have medical appointments. Working around my own schedule is a huge positive as I can factor in my health and family commitments.

Matching tasks to current needs

I can factor in the different types of work to best suit my moods, such as when I’m feeling more creative or able to concentrate on deep work. Working this way allows me to maximise my productivity and adjust to both my personal and client’s needs.

Avoiding workplace stigma

I can choose who I want to work with - meaning I can avoid anyone with a stigma against illness or the number of sick days I need to take. I also don’t have managers or colleagues complaining or gossiping if I need to take frequent breaks. I get to work around my conditions, choosing whether to disclose my health issues or not.

Working remotely

Working remotely is a huge bonus. First off there’s no long commute at either end of the day, and there are less issues with facilities being available when needed, for example if I need to take a rest.

Community

Finding like-minded people within a growing community of freelancers and self-employed has offered up a lot of support. Reading about shared experiences, connecting, and being able to ask for advice from others with a chronic illness is a real advantage.

“People with disabilities may need flexibility in the scheduling and other aspects of their work – to give them proper time to prepare for work, to travel to and from work, and to deal with health concerns.” WHO, Chapter 8 of the World Report on Disability, 2011

Personal Independence Payment (PIP)

Personal independence payment is a non-means tested benefit, designed to help with some additional costs of long term physical or mental health conditions or disabilities. PIP is replacing the current disability living allowance (DLA) which is gradually being phased out.

PIP is available for those who have daily living or mobility difficulties with long term health conditions, including chronic illnesses. Difficulties with daily living or getting around (or both) must have lasted for at least 3 months, or for those who expect these difficulties to continue for at least 9 months.

After an in-person assessment, if you meet the requirements, you’ll receive a weekly grant payment which is tax free.

For more information and to apply visit https://www.gov.uk/pip.

If you’re eligible for PIP and you work (which includes self-employment, you may be able to get the disability element of Working Tax Credit (up to £3,220 a year, or up to £4,610 if your disability is severe).

Working Tax Credit / Universal Credit

If you’re disabled and working at least 16 hours per week, and you’re already in receipt for Child Tax Credit, you may be eligible for Working Tax Credit. If you’re not in receipt of Child Tax Credit, you can instead apply for Universal Credit.

The eligibility rules for Universal Credit are dependent on your personal circumstances, savings and income. 

See the full set of eligibility criteria and apply at https://www.gov.uk/universal-credit.

'New style' Employment and Support Allowance (ESA)

If you have a disability or health condition that affects your capability to work then you may be eligible to apply for the ‘new style’ Employment and Support Allowance. Eligibility includes if you’re currently working (including self-employment), or have worked in the last two-three years (and have paid enough National Insurance contributions). 

You can continue to work when receiving ESA if you work less than 16 hours a week and you do not earn more than £143 a week. ‘Supported permitted work’ of more than 16 hours per week is allowed in supervised circumstances, however you still cannot earn more than £143 per week.

If eligible, a standard weekly assessment rate will be paid for 13 weeks and after assessment you’ll be placed into either a work-related activity group or a support group. Fortnightly payments can be a helpful lifeline to those with chronic illness who may need additional support but want to maintain independence and continue to work with reduced hours.

‘New style’ ESA can also be paid if you have had or are recovering from the coronavirus (COVID-19) and you’re unable to claim Statutory Sick Pay.

Full details on ‘new style’ ESA and to apply visit https://www.gov.uk/how-to-claim-new-style-esa.

Access to Work Scheme

The Access to Work scheme offers support in work if you have a disability or health condition. And yes, this does apply in certain circumstances if you’re self-employed.

If you’re disabled, have a physical or mental health condition that makes it hard for you to do your job (chronic illness looks to fall under this category), you can apply to get extra help from Access to Work. Help you receive is typically in the form of a grant to cover the costs of specialist equipment and adaptations, software and, in some circumstances, taxi fares. This also includes mental health support services and advice.

You can find full details of the Access to Work scheme, including eligibility criteria and how to apply, at https://www.gov.uk/access-to-work.

Disabled Facilities Grant / Equipment for your home

In addition to the above benefits, you may be able to apply for a disabled facilities grant or equipment for your home if you’re disabled and need to adapt your home to make it suitable. Contact your local council for eligibility and to apply.

There is a wide range of software and office equipment to help disabled freelancers and the self-employed. Necessary equipment will depend greatly on your individual circumstances.

• Screen readers and audio tools, often built straight into your computer browser, offer accessible options to read and edit documents. Google Chrome for example, offers a built in screen reader, screen magnifier and an option to type with your voice.
• Web accessibility options, such as My computer my way offers a range of accessibility settings for individuals, bespoke to the users’ needs.
• Track balls can be used instead of a traditional mouse for those with, for example, joint aches or carpal tunnel syndrome.
• Standing desks, yoga balls and kneeling chairs can help with posture and keep joint pain at bay.
• There are a growing number of apps to help manage medication, pain diaries and energy levels. Mental health and meditation apps such as Calm, Headspace and Aloe Bud, can also help reduce stress, track moods and provide useful reminders.

When you’re living with a chronic illness, sometimes the last thing you may feel like is working. Pain, mood, stress and energy levels can wax and wane. Therefore it can help to create an environment where you feel comfortable in a way that works for your individual needs. Whether that involves working from your ‘soft office’ (under the duvet), outside in the fresh air or at a standing desk that allows you to move around to alleviate pain. I find a weighted blanket, an ergonomic office chair, and custom earplugs when dealing with sensory overload to be most helpful. If it works for you - you do you.