Our volunteer Sarah shares her experience

Living with a disability and/or chronic illness? Unable to work or having difficulties finding suitable work, feel isolated, depressed?

This is how volunteering for disability friendly organisation Independent Lives has equipped me with new skills and purpose.

Sarah volunteerHi, I’m Sarah and I’ve been ill with chronic fatigue syndrome (m.e/cfs), postural orthostatic tachycardia syndrome (pots) and mast cell activation syndrome (mcas) for most of my adult life. These have left me unable to work since 2005 and, for many of those years, almost totally housebound. I’ve also struggled with feelings of isolation and depression accompanied by a loss of self-esteem as the remains of my previously active life fell away.

For a long time I was too poorly to contemplate any sort of commitment. In the past two years I have seen some improvement even though the constant risk of overdoing it means I have to be extremely careful.  I wanted to find a way to reduce the social isolation and give me a sense of purpose, and volunteering seemed an ideal option.

Initially I felt a bit discouraged that many of the opportunities I read about would be too physically and/or mentally demanding for me. Then I stumbled upon a flier by Independent Lives who were keen to take on volunteers who live with a disability or chronic illness as volunteers who have direct personal experience of a disability are seen as a valuable contribution and resource to the ethos of the organisation which works for and on behalf of people living with a disability.

This sounded perfect for me and so towards the end of 2016 I applied to Independent Lives and soon afterwards I began volunteering for two hours a fortnight, with a view to committing to weekly later on.  This gives me a chance to see how it affects me mentally and physically and give me time to recover so that I don’t become too fatigued and unwell, especially as the effects are cumulative over time. At times I have not managed to complete the two hours due to physical and/or mental exhaustion, but I will make the time up at home if I can. There is never any pressure from Independent Lives; on the contrary, they are always supportive of my need to manage my health and grateful for what for what I am able to contribute.

I’m assigned to an employee who is responsible for arranging tasks for me to do and making sure I’m happy with what I’m doing. This means I’m never on my own as there is always a staff member available to help, although I complete tasks independently if I’m able. I’m known as a communications volunteer which covers a wide range of tasks, all concerned with communicating information to the public and/or other organisations. This means I don’t do the same thing each time I volunteer. The range of tasks I have done include researching other disability organisations on the internet and making notes on how information is presented, entering data such as company names and addresses into Microsoft excel, attending meetings and writing minutes (recorded for me to transcribe at a later date since I am unable to concentrate or handwrite for long periods), and more recently, writing blog posts.

I get a huge amount out of my time with Independent Lives. It gives me a chance to see what I am capable of both health wise and in learning new skills. I never feel that I have to do a particular task; they always ask me if I am happy to do what they provide on a given day. My role is goal focussed so they ask me what I am hoping to gain from volunteering and cater to existing interests and strengths. I am happy to be learning new skills and improving existing ones which have become rusty after 11 years out of work.  And of course, all this will be a useful addition to my CV if the time came in the future where I could consider applying for paid employment.

Also, it makes a massive difference to my emotional wellbeing and overall quality of life to have somewhere to go where I can be useful and in a workplace environment even just once a fortnight. It makes me feel like I’ve done something useful and contributed in some small way to raising awareness of the impact of disability on people’s daily lives and the issues they encounter. It lessens the social isolation as I volunteer in a busy office with employees and other volunteers as well. I have already met others who are dealing with very similar issues and feelings. Everyone is really friendly and we can chat and have a laugh too. On a practical level, volunteering gives me a structure to my life which I really like.

Obviously, volunteering is still a commitment, even if a very flexible one, and I won’t lie; it can be hard to manage desire to volunteer with fluctuating symptoms including profound fatigue, muscle pain, and malaise.  I need to pace myself carefully and I don’t force myself to go in or stay the two hours if I’m not up to it. Also, I have depression, which means I can struggle with motivation purely because of how I feel mentally, but when I do turn up to volunteer, I’m always glad that I did and feel better for it. As a rule, I’ve found the benefits of volunteering far outweigh the difficulties. And it makes a massive difference to be volunteering with a disabled friendly organisation as they understand what it’s like to experience fluctuating symptoms.

Before volunteering for Independent Lives I felt that there were no roles out there that I’d be able to manage but I was proved wrong! Volunteering isn’t going to be manageable for everyone, but if there’s a chance you could attempt something, or if you’re looking for paid employment as a disabled person, it’s important to find companies who are open to taking on volunteers or employees living with disabilities and can make reasonable adjustments. These may include an accessible workplace, frequent breaks or the reimbursement of travel expenses.  Know your limits and pace yourself carefully, especially at first. Above all, enjoy it!


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