You live with a long term condition or a chronic illness, like ME/CFS, fibromyalgia, or Long COVID...

There are so many things that you can’t do any longer. Your doctor, your boss and even your family don’t understand. You feel embarrassed, guilty, and ashamed that you’re letting people down, or being a burden.

It’s relentless. You’ve lost faith in your abilities, and in yourself. You’ve lost hope for a more fulfilling life. You feel like you’re not you any more.

You just want your life and your self back.

Hi. I’m Elinor, the founder and executive director of We Make The Path CIC. That's me at the top of the page.

I help people living with chronic illnesses and long term conditions to reclaim themselves, take charge of their lives, and move towards the lives they want, even with their symptoms.

When your symptoms first appeared, your first stop was probably your doctor, trying to work out what on earth was going on with your body. If you were lucky, they took you seriously, and ran a whole heap of tests that found… more or less nothing. If you were unlucky, they told you it was ‘hormones’, or dismissed you outright.

You might have (eventually) got a diagnosis, but no useful treatment. You may have been sent for Cognitive Behavioural Therapy, on a mindfulness course, or to a self management group.

These approaches may have helped you to understand how your condition works, or reduced the impact of stress on your symptoms for a while, but they focused just on coping with your symptoms in the most basic way, and failed to address how to work towards your life goals, while living with your symptoms.

I understand, because I’ve lived with multiple chronic illnesses for most of my life. Before I was diagnosed, I blamed myself for my constant collapses in energy, brain fog, weird muscle pains, inability to ‘live up to my potential’, and my lack of success with career, money and relationships. My self esteem was very low, and even though I kept on trying, I often felt hopeless, useless and frustrated.

For decades, even though I went to doctors regularly, and even had some good counselling, I had zero support with my symptoms, or with how to live a good human life with those symptoms. When I finally got diagnoses for two of my conditions, well into my 30s and 40s, I was devastated at the opportunities, possibilities, joy, and time I had lost, not only to my conditions, but also to blaming myself for their effects.

Thanks to the Internet, I was able to connect with people experiencing the same symptoms as me. I joined online peer support groups, which were helpful when I wanted to vent, but when I decided I had things I wanted to do with my life, there was no space for talking about it or getting the support I needed.

I had to work out how to live a life with chronic illnesses, in a way that allowed me to make my unique contribution to the world, all by myself.

Although I’ve lived with chronic illnesses for so long, I’ve managed to cram a lot of experience, training and qualifications into my life.

As well as my own experience of living in a chronically ill body, I have masters degrees in social anthropology and in human geography, training in communication, relating with difference and conflict transformation, qualifications and experience in adult education and community development. I’m also an ordained Interfaith Minister, and have a background in complementary therapies and stress management.

This enables me to bring a unique combination of skills, attitudes and abilities to supporting you:

a focus on your needs and desires, not on any agenda of my own, as we work together

• curiosity about you, your situation, and how you’re affected by your social, emotional, and material environment

• an ability to land wherever on the spectrum from utterly practical to extremely woo-woo works best for you, whatever your religious or spiritual background (or lack of it)

• skill to hold you safely as you look at yourself, your experience, and your life, and feel whatever emotions you have

• an abundance of knowledge and tools to get you closer to the outcome you want, at a pace and in ways that work for you

• a constant learning approach, which encourages you to keep trying things out, experimenting, and building what works into your own unique support structure

Unlike most supports and services, I’m not focused on your symptoms. I’m focused on you.

Your needs. Your desires. Your goals. Your life, and how you can get to where you want, whether your symptoms get better, worse, or stay the same.

I’ve done my fair share of collapsing into despair, rage and helplessness (and I still do, on occasion), but I’ve also been able to apply the skills, tools and attitudes of all of my training and experience to build myself a sense of self, a career, and approaches to money and relationships that I’m proud of, that empower me to take charge of my own life, and that are enabling me to flourish.

What I’ve built hasn’t changed my symptoms, but now:

• I’m confident talking to doctors, work collaborators, family and friends about my wants and needs, whatever level of empathy or scepticism they have about my symptoms;

• I know I can take care of myself in the face of other peoples’ dismissal or disregard, and make the most of their empathy and support;

• I can pace myself in a way that is kind to myself and that stretches me a little, depending on what I need that day;

• I have a flexible plan for where I want to go in my life and how I’m going to get there, however my symptoms fluctuate.

And for those can’t-get-out-of-bed days, I have specific steps to meet my most pressing needs and to keep me connected to what I’m working towards.

I want that confidence, that self-assuredness, that vision, and that practical action for you too, even though (or especially if!) that might look very different in your life than it does in mine.

• Living in an isolated rural location for a quarter of a century (O.o) has taught me that I can’t escape myself, so I need to embrace myself instead. I’m better at it some days than others.

• My partner and I rebuilt our home after a devastating house fire, and turned it into an eco-friendly dream home – which we’re now leaving to join city life. The quiet life is nice and all, but having a social life when you’re geographically isolated and disabled is haaaaard.

• COVID is real, ongoing and airborne.

• Creativity is an essential part of my self care. I usually have at least one sewing or knitting project on the go, as well as occasional writing, storytelling, and art projects.

• I live with fibromyalgia, depression, SAD and IBS, and probably EDS, MCAS and POTS, as well as ADHD and probably Autism. I’m also queer and genderqueer. (Have you ever noticed how many of us have some kind of dysautonomia and are neurodivergent and are LGBTQIA+?)

• Napping is non-negotiable.

Click here to book a free, 20 minute call to chat with me about where you’re at and how I and We Make The Path might be able to help.