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.
How is a chronic illness defined?
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.
How many freelancers suffer from a chronic illness?
The significance and burden of chronic illness should not be trivialised as there are many more freelancers and contractors who are managing chronic illnesses than you might imagine.
With around 15 million people in the UK with long term conditions and chronic diseases, and with a growing self-employed community numbering around 4.3 million people in the UK, it's likely that at least 1 in 4 freelancers may be affected in some way from chronic or long term illness, which may impact their capability to work.
And chronic conditions are likely to occur more often in the self-employed sector than the general workforce, as many people choose to work for themselves based on the option to manage their work and health balance for themselves. Long term and chronic illness tend to exhibit more in older people (aged 60 and over), a prominent demographic within the self-employed sector.
For those with chronic illnesses, productivity levels may be unsteady and many freelancers find themselves losing hours to both sickness and recovery time. Managing multiple chronic illnesses may also be a concern as the Department for Health cites that “the number of people with multiple long-term conditions appears to be rising”. And the struggles associated with chronic disease can often leave you wondering what to do when you fall sick as a freelancer.
What are the advantages of being self-employed if you have a chronic illness?
“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
What challenges are there for freelancers with chronic illnesses?
It’s easy to feel siloed and alone when you have a chronic illness or disability. It can be overwhelming when you have a bad day or aren’t feeling 100% if you’re feeling alone in your situation. Building a treatment plan for your chronic illness and having a support network in place can both provide the proper support when you need it.
Managing finances and having a steady income can be a challenge with a chronic illness. If you need to take breaks from working, even if that may be for a few days (let alone weeks or months if you have a flare-up of your condition or require hospital treatment), it can be difficult to manage finances and workload. Having a good understanding of your chronic illness can help identify any trends in symptoms and when you may need additional support. Budgeting and financial planning, for example working out your business expenses is a must.
When looking at the challenges freelancers with a chronic illness face, stress plays a significant factor. Worrying over deadlines and being unable to work due to illness can exacerbate symptoms. This, in turn, can increase stress levels making it easy to end up in a cycle of stress and worry.
A significant downside is having no holiday pay or the benefits of being employed, such as a pension or maternity/paternity pay. However, an easy way to rectify this can be to build potential costings into your budget and client charges.
Benefits and Grants Available For Self-Employed With Chronic Illnesses
How to manage a self-employed career with a chronic illness
Be realistic about deadlines. That means being honest with yourself and your clients (in terms of when you can deliver work, not the details of your illness). It’s more than acceptable to say you’ve not got availability if you know you’ve got a project booked in and will need some downtime to rest or recover.
Schedule time for rest and self-care. As a freelancer, you rely on yourself to pay your bills, so spending time on yourself is an important investment.
Additionally, investing in insurance to cover short term periods of sickness as a freelancer can also give you peace of mind. Creating a savings fund for rainy days can also alleviate stress, knowing you have a buffer or cash cushion to fall back on.
Find like-minded freelancers and support groups. There are support networks in the freelancing world, and it’s surprisingly easy to find others in a similar situation. Facebook groups and forums provide support platforms for the disabled and chronically ill, with advice on everything freelance from contracts to managing pain.
On Facebook, try searching for “Insert illness here” support group for your local or regional forums or access the following groups for like-minded communities:
- Chronic Illness Entrepreneurs - www.facebook.com/groups/chronicillnessentrepreneurs/
- Freelance Corner - www.facebook.com/freelancecrnr
- Creative Freelancers UK - https://www.facebook.com/groups/creativefreelancersuk
- Chronically Awesome Tribe - www.facebook.com/chronicallyawesometribe
Be kind and compassionate to yourself. Respect your limitations and work to the best of your ability but don’t beat yourself up if you can’t complete a task. Split your time wisely between work and rest. Listen to your body, and don’t push too far so that you burn out or use up energy (spoons) from another day.
Software and office equipment to help chronically ill freelancers
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.
Support and other resources for chronically ill freelancers
- Disability Rights UK, run by and for people with lived experience of disability including long term health conditions - https://www.disabilityrightsuk.org/
- Citizens Advice Bureau, Confidential and independent advice - http://www.citizensadvice.org.uk/
- MIND, Information and Support for those living with a mental health problem - https://www.mind.org.uk/
- Mental Health at Work, Small businesses and the self-employed: moving out of the pandemic - https://www.mentalhealthatwork.org.uk/toolkit/small-businesses-and-the-self-employed-moving-out-of-the-pandemic/
- Scope, the disability equality charity, who offer practical advice and emotional support - http://www.scope.org.uk/
- Big Orange Heart, A well-being support community for remote workers - https://www.bigorangeheart.org/
- My computer my way - https://mcmw.abilitynet.org.uk/
- Chronic Illness Entrepreneurs Group - https://www.facebook.com/groups/chronicillnessentrepreneurs/
- Freelance Corner - https://www.facebook.com/freelancecrnr
- Creative Freelancers UK Group - https://www.facebook.com/groups/creativefreelancersuk
- Chronically Awesome Tribe - https://www.facebook.com/chronicallyawesometribe
- Spoon Theory - https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
- GOV.UK Long Term Conditions Compendium - https://www.gov.uk/government/publications/long-term-conditions-compendium-of-information-third-edition
- Blog: What to do when you fall sick as a freelancer? - https://freelancecorner.co.uk/what-to-do-when-you-fall-sick-as-a-freelancer/
- Blog: Budgeting for the summer - https://www.ipse.co.uk/ipse-news/mymoneymag/mymoneymagazine-blog/budgeting-for-the-summer.html
- Blog: What expenses can I claim working from home? - https://www.ipse.co.uk/ipse-news/ipse-blog/expenses-claim-working-from-home.html
- IPSE Member Benefits - https://www.ipse.co.uk/member-benefits/using-your-benefits.html
- Benefits and grants: Access to Work - https://www.gov.uk/access-to-work
- Benefits and grants: Personal Independence Payment (PIP) - https://www.gov.uk/pip
- Universal Credit - https://www.gov.uk/universal-credit
- ‘New style’ Employment and Support Allowance - https://www.gov.uk/how-to-claim-new-style-esa
- Calm - https://www.calm.com/
- Headspace - https://www.headspace.com/
- Aloe Bud - https://aloebud.com/
Managing a self-employed career with chronic illnesses can be extremely tough at times. But it can also be incredibly rewarding, and allow you to manage your work and health more effectively than as an employee.
As a freelancer with chronic conditions, I've found amazing communities offering a wealth of advice and support which has made the challenges more manageable. I wouldn’t exchange my freelance life. It’s incredibly gratifying and allows the flexibility that a typical 9-5 simply doesn’t allow.
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