Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met?
Of course I do have healthy actual friends. People who have known me for a long while, and I know they will always be in my life one way or an other. Plus, there’s my husband, who’s my best friend. But, other than that, the people who I connect with are thousands, maybe even millions of miles away.
How can this be? Well, when living with chronic illness, it’s hard to find people who understand. I’m very lucky because those, that have stuck by me, in my life always try their best. They treat me with kindness and a lot of patience, and bring humor into my non humour life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it truly feels like to live in my skin and that’s something I’m very happy about and I would never wish this on them. Hard for me because I constantly wish I could help them more and do all the things I want when I want to do them.
I am not even sure if you can imagine the life that I live. It can and is so very lonely and frustrating. Being and feeling so alone is one of the most challenging feelings that comes with living with chronic and invisible illness. Because of those feelings, I began to look for support groups – some of my illnesses I did find groups, others practically nothing. A lot of the time, I am not well enough to go out and physically attend group get togethers so online and Facebook became my support mechanism .
I soon found several groups, and joined them all. I began, to find people like me! And early in my journey with chronic illness, these groups helped me to understand what my newly diagnosed health conditions were and why I was like I was. As I kept connecting I soon found some beautiful people that are true friends for life and although I may not be in those groups anymore for many different reasons, I’ve kept those friends and we have all helped each other wander our similar but oh so different journeys of life. Through this modern day world, I have also added to what I call my true friendship group a gathering of mostly women found again through predominantly Facebook . We have connected because of likeminded goals and visions but they all inspire me greatly to push through my illness struggles to be my truest self for the story, message , mission and purpose I have to share with the world! I am in fact been lucky enough to have been able to meet some of these most beautiful friends and just as I had I found online, they are just as beautiful in reality too which allows me to be further inspired and motivated everyday. When, I had such a major fall with mental and physical health last year none of them disappeared where people I had lived and loved in the reality of everyday dropped me like hot cakes . That was hard to deal with and probably even contributed to worsening health complexities . Come forward, I am still struggling to come to terms with the complex list of health conditions that I have to live with things like – brain tumours, autoimmune conditions, anxiety, depression (that I never wanted to accept) but it was the latest of diagnosis’ that really dealt me my biggest blow – Functional Neurological Disorder – WTF is that ! It’s taken a number of months and a whole heap of hospital stays and appointments to really become familiar with this illness that disables my every being! Paralysis down my right side of my body, insomnia caused by what I can only refer to as jumping jack legs as soon as I lay down and many more symptoms that I’ve told you about in previous blogs. I fell so ill that my beloved wellness centre where I was a trained life coach and yoga and meditation teacher was waved goodbye! I had too, I couldn’t look after myself so!! I must say it was the most beautiful group of soul sista’s, that kept me going through the darkest of moments. This has brought me to right now, with rebuilding of me, my health and my life. I want to be an angel, a soul sista for other FND women, to show them that they are not alone. I began with this blog, which through each post is something of my wanderings looking for wellness. I then created other channels across the social media network, but then I remembered how my journey began finding true heartfelt friends it was from the Facebook group. I looked everywhere, for FND connections but nothing I could see. So I created my group, http://www.facebook.com/TheLongWalkWithFunctionalDisorder for people like me, to come and connect and support each other on the good, bad, hard and everything else days. I want to create a caring space for each one of us to come when we need a friends ear of support. Isn’t this a space creation for where true friends are made and as we all join and connect, we may just become even more fierce in the world recognising our chronically invisible and debilitating illnesses so that we can all manage a better quality of life. This group, is my creation of wanting to let my other members (newest friends) know that someone is in their corner, no matter what? My group is only young, but it has begun and while I’ve never met these amazingly brave new friends, but I want them to know like all of my other soul sista’s and brothers,that they literally save me on my most darkest days. On really bad days and their are those , I feel I am in prison from my home but through chat and inspiring banter, I am pushed to step outside of my pain barrier to build more awareness through my story. Having a support network like this, allows life to be moved forward with energy for my vision and purpose. Through finding true connections where I can talk about my frustrations with those who understand makes the weary journey worth it.
If you are living with chronic illness and particularly FND, I urge you, to please find friends that understand you and your journey. Come and find me across on social media because I do not judge your journey, I only want to be there on those days and nights where you need to find someone to laugh with you because of the dire straits you find yourself in, and it’s OK because I am in them, too. In this modern day, nobody has to feel alone. Your friends are out there. They might just be in another state or country.
Come an connect and let’s wander towards mind and body wellness together;