I asked a close friend, confident and someone I highly respect to write a guest post for what it is like to advocate for people rather than just hear it from me! Read on to hear The Spoonie Mummy give her views.
- A person who publicly supports or recommends a particular cause or policy
- A person who puts a case on someone else’s behalf
So now you know what an advocate is, what is it like to be one?
My name is Natalie and I have dealt with chronic illness my whole life. Aged just fifteen months I was diagnosed with juvenile (rheumatoid) arthritis. Aged seven, I was also given a diagnosis of chronic iritis, a disease of the eyes which is common in children who have been diagnosed with arthritis. I had bowel problems from the age of 8 or 9 but my Crohns Disease wasn’t diagnosed until I was 26. I have had a hip replacement at the age of 23 and was 30 when I had to have surgery to remove part of my bowel which left me with an ileostomy.
From a young age I have wanted to help people. I was always the ‘model’ patient picked by my medical team to demonstrate things, appear at conferences and meet new patients. My Mum’s work with the now defunct Young Arthritis Care led me to writing pieces for the magazine issued by them quarterly, as well as being a part of the roadshow tour. I was lucky to have a strong, positive role model in my Mum, who wanted to make sure I gave myself the best possible chance at having the life I wanted, despite my conditions. Sometimes I hated her for making me do my exercises when I was sore. But now I am so grateful. I have had arthritis for 31 of my 32 years and my body is holding up relatively well! I have also seen the impact of other patients who did not have that kind of support.
I feel that being knowledgeable and understanding your chronic illness goes a long way in accepting your condition and then, potentially, to improving it. Some of the best support I have received, especially with regards to my Crohns Disease and ileostomy, was from other patients with the same things. Not only do these chronic illnesses affect you physically, they also affect your mental health. I think all these points correspond with my work as an advocate and are things I want to help people with. I have a lot of knowledge about my conditions as I enjoy discussing them with my doctors as well as researching them myself. I have gone through every major life event – school, pregnancy, marriage, turning 30 etc. while being ill and now use these experiences to encourage others and show them what is possible.
I share my life on my blog and social media to highlight the issues people with chronic illness face. This is to help raise awareness of the types of things we have to do to live a ‘semi’ normal life. It is also a way of showing others with chronic illness that they are not alone. There is nothing worse than feeling alone while trying to fight something like arthritis, so this is hugely important. I also keep my inboxes open to anybody needing help, advice or just a chat. I am regularly contacted by people facing a similar surgery to what I have had, with a question about ostomy products or looking for someone to sound off to. Being unable to work currently due to my health, advocating also provides me with a great sense of well-being. I am still able to help society in some way, by helping other people.
My blog has led to many great opportunities. Firstly I appear on the live, weekly show – The IBD & Ostomy Support Show – on YouTube with four other amazing advocates. We discuss all things IBD and ostomies and everything in between! I am also an admin for the #sickbutinvisible campaign which my boyfriend helped set up two years ago. We aim to spread awareness of, and support people with invisible illnesses. I was also given the opportunity of working with the company, Salts Healthcare. I use the Salts Confidence BE ostomy bags and think they are fantastic. Salts gave me and my partner Ste, who also has an ostomy, the chance to sit down and chat with one of the engineers who helped design the bag. I then went on to feature in a video for them for their public campaign. It was a fantastic experience and something I have had some amazing feedback from. The Salts products work so well for me and if I can give someone else that same experience by encouraging them to try a different product out, it makes me so happy.
Advocacy and blogging can also be hard work. It never stops, the messages can be coming in 24 hours a day. In many ways I have to try and treat it as a job and make sure I give myself time away from the computer/phone as well as getting the rest I need as I am still battling my illnesses as well. But knowing someone may need same help, advice, or just to know that someone is there can make that difficult. My boyfriend, family and friends have been so supportive of the work I do which does make a huge difference. Many of the people I help also understand that I am a ‘spoonie’ the same as them and will need time away when I am unwell. It is also great to have a network of friends who do a similar thing. I can refer a person on to another advocate if I am not doing so well myself, or if I know someone else has dealt with a particular issue so can answer any questions on it better than me.
I am currently studying psychology and mental health with the Open University. I aim to use the skills I am learning in the future to support more children and young people who are diagnosed with chronic illness to support their mental health. Being able to combine my passion with a possible job in the future will be amazing. And proves the point to all I try and help that you CAN still reach for and attain your goals, even with a chronic illness!
Thanks Nat Nat I think you encapsulated that really well.