Keith and Amy Mayers both live with chronic conditions and understand the feelings of fear and loss that can come with a rare disease diagnosis. They have channelled their personal experiences into helping other people living with chronic conditions to navigate their own new life story

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

In spite of what we’re going through, we still have strengths. Illnesscoach.com is about finding those strengths which can help us live fulfilled lives and give us purpose. Everybody has potential. Everybody can find purpose in something—no matter how limited they may be. We will partner with you to help you tap into your underlying strengths, maximise your potential and help you navigate your way around the limitations of your condition towards meaningful and authentic living. While we focus on progress as opposed to perfection, we also emphasise that disability does not have to mean disempowerment.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Keith: It began when I was in the intensive care unit back in 2011 after getting sick with vasculitis. I had been told that without treatment or diagnosis, I may only have a couple of days left to live. I was trying to make sense of what was happening. I concluded that if I pulled through, I could use this experience to help others who may end up going through something similar. I found many of those individuals in the Facebook groups for people with the same disease. Like me, a lot of them were having a tough time processing their thoughts, dealing with negative emotions, and learning how to cope with identity loss. Eventually I began studying psychology at a post grad level and focused my research on the psychological mechanisms of living with an illness. Much of the research I came across revolved around drawing from dormant strengths, finding purpose and post traumatic growth. I consequently decided to begin coaching around these themes and needs.

2.

How does your business benefit the rare disease community?

We help individuals in the rare disease community at several levels. Firstly, we can help them manage challenging feelings such as stress, anxiety, depression, and loss, which often accompany living with a rare disease. Secondly, we can help them rebuild their confidence and sense of identity which may be lost during the rare disease journey. Thirdly, we can help them to formulate self-management strategies which are often vital when operating at a diminished physical capacity. This can often involve mind mapping, identifying hidden strengths or simple goal setting. Alternatively, we can help them to make sense of their rare disease experience, find new meaning out of it and visualise best possible outcomes.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

We did not really receive advice from any one individual. It was more an accumulation of inspiring thoughts we heard on various podcasts. These mainly included ideas about embracing risk and living with the insecurity of abandoning regular employment. It was also the idea of making sure that we stayed the course and stayed in our lane. Not allowing ourselves to fall into despair by comparing ourselves to others who are living with an entirely different set of circumstances. Finally there was also the idea about working around time and energy limits, using whatever hours in the day we still had available to make this work.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

We forgive ourselves if not everyday is a productive one. We also look at self-care as just as much an important component of operating our business as each of the other activities. We try to make sure we do a little something to progress our business in some way, regardless of how small it may seem. This can mean relying on contingency planning, modifications and abbreviations to the way we work.

5.

What advice do you have for someone starting their own business?

Firstly, try to decide what it is you really want to be doing. Think about if this is something you would do for enjoyment, even if you were not getting paid. Maybe visualise still doing this activity in ten years and whether you will still be enjoying it. This may involve considering multiple options and determining what the most rewarding one might be. It is important to take into consideration any physical or emotional limitations as potential barriers. At the same time, itemise the various personal strengths and resources you have at your disposal. Finally avoid thinking in absolute terms such as failure or success. Look at your business journey as part of a continuum. We like using a 1-10 scale to assess where we are at. If 1 is our start point and 10 is where we want our business to be, we are currently at a 5. Our next goal is to get to a 6. Of course, these self-assessments are going to by highly subjective, but they save us from a lot of despair.

6.

What are the most rewarding aspects of establishing and running your own business?

That we are having a positive impact on the people that we help. We can look back on our lives and say that we did something we found fulfilling. We were able to give our respective diseases a meaning and a purpose.

7.

What would you consider to be the greatest achievements of your business thus far?

Helping our clients enhance their sense of optimism and motivation by realising that they have more options available than they may have initially imagined. We have seen how this can have a positive impact on overall wellbeing.

8.

What advice would you give someone considering working in the rare disease space?

It is important not to over generalise because there are a vast number of rare diseases, and everyone has a unique experience. Consequently, it is beneficial to interact with as many people within the rare disease space as you can. Social media can be a good place to start doing this. Over time you will be better able to understand a variety of struggles, at the same time as recognising the strengths in different individuals. Empathy is also a key ingredient and so having experienced a rare disease oneself can be advantageous.

9.

What are your hopes for the future of your business?

To help many more individuals work with their strengths, discover new options, find meaning and enhance their overall wellbeing. 

10.

If you hadn’t founded Illness Coach.com, what was Plan B?  What did your 10-year-old self want to be?

For Keith, he would like to have become a musician and he might still do this one day…

Amy has always wanted to be a fashion designer (even at 10). Now she has great interest in how the design world intersects with illness/disability communities and has plans on further studies in this area.