I recently had a conversation with a woman who is living with an episodic disability. As we talked, I was able to listen to her personal story of living and working with an illness that would sometimes allow her to work and sometimes not. For her, the illness eventually became so consuming that she needed to leave her place of work. While her illness had a significant impact on her work life, it also affected how she felt about herself and her social life. I have come to learn over time that her experience living with such an illness is far from unique.
An episodic disability is marked by fluctuating and often unpredictable periods and degrees of illness and wellness. People living with episodic disabilities are often uncertain about what their health status will be from one day to the next. Periods of good health may be interrupted by periods of illness or disability. Often it is difficult to predict when these "episodes" of disability will occur or how long they will last.
Increasing numbers of Canadians are living with lifelong episodic disabilities. To provide a few examples:
Twenty percent (20%) of all Canadians will experience an episode of mental illness in their lifetime.
Two million (2,000,000) Canadians have diabetes.
Sixty-three thousand (63,000) Canadians are living with HIV.
Four million (4,000,000) Canadians are affected by arthritis and other rheumatic conditions, with numbers expected to double by 2020.
If you are in this category, you may not think of yourself as someone with a disability. But you have likely experienced pain, fatigue, or other symptoms. Maybe you struggle with anxiety or depression. Perhaps because of your illness you can't do things you used to take for granted, like climbing stairs or going for a long walk. Maybe you had to stop working.
Living with an episodic disability impacts many areas of life including health, employment participation, income security, coordination of care etc. For example, if you are a person living with an episodic disability, you have probably experienced the emotional, social and possibly work-related ups and downs that come with living with an episodic disability.
Know that you are not alone.
There are a wide range of rehabilitation services that can reduce your physical symptoms and treatment side effects, provide you with emotional and psychological supports, and help you with employment issues.
Rehabilitation is a dynamic process that increases one's ability to live a satisfying, productive and meaningful life. This includes physical, vocational, and psychological rehabilitation. Rehabilitation can help you deal with the problems caused by an episodic disability or its treatment by helping you:
Stay healthy and improve your overall quality of life.
It's important to talk to your doctor about all of the problems and challenges you are experiencing in your day-to-day life - physical, mental, emotional, financial or work-related. Many of these problems can be helped by various types of rehabilitation or supports.
Rehabilitation services are provided in a variety of settings: hospitals, outpatient clinics, your own home, your workplace, and community agencies.
You will need an assessment and referral by a doctor to access many of these services. This is especially important if they are being paid by your province's health plan or private insurance. If the service is provided by your local organization supporting people with an episodic disability, you may not need a referral and the service may be free.
Pass this information along. Let others know that there are a variety of resources available to help people living with episodic disabilities.
For more information, see our website at : http://www.hivandrehab.ca/
The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national, multi-sector, multi-disciplinary, charitable working group of stakeholders involved in rehabilitation in the context of HIV and episodic disabilities in Canada.
Since 2001, CWGHR has been a leader in research, education and advocacy on issues related to HIV and other episodic disabilities. Under CWGHR's leadership, the Episodic Disabilities Network was established to bring together a variety of disability communities to work on these shared issues.
Landscape of Literacy and Disability (Canadian Abilities Foundation publication) by Ezra Zubrow, et al. 
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Comments
For myself personally and others who are experiencing an episodic disability...this is simply awesome to find support.
I have felt so ALONE trying to deal with my diagnosis of RA (Rheumatoid Arthritis) and how it has impacted All areas of my life, both at home and work.
Chronic pain and fatigue are my daily companions and it has affected my ability to work and to actively seek work.
I lost my job after the plant I was a Contractor for shut down due to my company losing their contract.
It has affected my ability to work at times but I am still actively trying to seek employment while dealing and trying to oope with an "episodic disability".
Thank-you so much for publishing this article.
It is both encouraging and supportive of those who are like myself caught between a rock and a hard place.
It is not that we cannot do the job, but we might need accomodations to help us do it...
My belief is this article will make people aware and educate all of us on the impact ANY disability has on an individual.
I feel it opens the doors for further conversations and will also empower those of us with an "episodic disabilty" in terms of accomadation and accessibility.
Again, thank-you.
Loretta Tweed