Tuesday, February 28 2017
"Nothing can dim the light that shines from within"
I have heard this quote time and time again, often stopping to reflect on what it means for me. On days like today, where approximately 350 million people worldwide come together to shed the light on World Rare Diseases Day and helping to raise awareness of the different rare diseases by giving patients a voice to share their lived experiences.
For me, everyday is rare disease day and I am reminded of that several times a day.
But it is important for me that while I try my best to share my story to educate, empower and inspire others on their own journeys, that I know that all of this doesn't define me and I that I am not my disease(s).
I don't live with one rare disease but three, which have all attributed to different health issues mostly chronic, but these have helped to shape me into the person I am today.
One thing being rare has taught me is that I am resillient.
I live a life that is different to that of my peers, it has often felt lonely and isolated, but there have been times where it hasn't been. I know Facebook changed my life for the better, it helped me to find and connect with people online who understood... because of Facebook, I was no longer alone as I navigated my way forward.
However, being in online support groups can be rather destructive at times especially when you are struggling with your illness or your identity or if you are in a very vulnerable place yourself. Sometimes Facebook can be an escape and safe space for people whether it is sharing/venting with people who 'get it' or if you are wanting to share your story or progression of your disease; it can also be too confronting to some who are finding it difficult to come to terms with their own prognosis or are using Facebook as an escape from their reality and it can feel like your disease is everywhere you look.
For me, I have experienced the latter quite often and especially of late.
I log on to Facebook to just catch up on the happenings of family and friends, when I get a notification of someone posting in the group or see a post on my newsfeed; It is a post that someone from the group has died from the disease (that is going to be responsible for killing me too one day) and it got a little too real for me to handle because it wasn't the first post of that day and it wouldn't be the last.
Somedays when there are reminders of my reality when I am already in a vulnerable state is really hard to come to terms with.... I am not in denial that this disease will not kill me as I know it will, but when my resillience is low is when it feels like everywhere I look all I can see is reminders of the disease(s) and death.
It is moments like these where I remove the notifications of the group and hide them from my newsfeed, at least until I am in the mindspace where it isn't taking over my life - especially my online life - as I need to be able to feel safe. This is my way of self-care.
At times it is admitting that I need to feel safe from myself and the thoughts within.
But just because you are in these online groups of your own community, doesn't mean it has to rule over your life. You don't have to be in these groups to know everything to say to everyone, as there isn't always the right thing to say (and it can get exhausting REAL quick). It is okay to be the member who actively listens to people when they need to vent or you can be there to help celebrate their wins by simply liking their status to acknowledge it, knowing that one day it could be you who needs to talk and just have someone who gets it listen without necessarily saying anything.
It is up to you how you find value in support groups, remembering that you'll never truly be alone and that when you need help you have a village to help you can be a huge comfort on your journey with a rare disease.... I know it is for me.
Prior to 2010, I had never heard of FAP or that young people could get bowel cancer afterall my dad was only 39! My doctors had informed me that I was their only patient with FAP and only known case in the area (I later in 2016 learned that there were another family), but in my feelings of isolation and desperation for answers, I came across groups on Facebook where there were other members who either had FAP themselves or had a loved one living with it and joined. The group was all over the world and I spent time learning about others' epxperiences so that I had a better idea of how things would be or what to expect.
Then in 2012 my dad died, later that year I learned that I had early stages of bowel cancer and would need all of my bowel removed. I was told I needed a permanent ileostomy and found myself feeling alone again. I was given material about life with a stoma, but it all related to being over 50 which I as a 21-going-on-22-year-old could relate to.
So I started my blog to try and inspire other young people with a stoma through being ostomistic, a word I stumbled across one day when I tried to say optimistim with a stoma. I began writing blog posts about my journey, tips and tricks I had found, and also using my platform to try and empower others to make better decisions for their health through raising awareness.
I mostly assumed people were reading it as my stats told me so but ocassionally someone would comment or contact me to say thank you for helping them, which helped me to feel that all this was worth it and wasn't wasting my time.
Then one day it lead me to one of my best friends who I later realised I couldn't imagine life without her, probably one of the greatest things to come out of my blog journey.
I later had this idea to create an online magazine for young ostomates as a collaboration between other ostomy bloggers, ostomy businesses or ostomy professionals to help deliver content that is relatable for young ostomates to help them to navigate life with an ostomy. This officially launched earlier this month and has been well received worldwide!
But while my rare diseases have altered the life path that I had envisioned for myself, it sure has given me the empowerment to take back control of my life and to look for the opportunities in each day. I wouldn't have started my blog, an online magazine or aspiring to be a inspirational/motivational speaker.
By not letting my disease define me, I was able to find the real me... and I have learned to love myself and find self-worth which was something I never had before.
I am not my disease(s)
I am rare
I am me
and therefore I am unique!
p.s what is one thing you have learned as a result from your rare disease?