Self-Advocacy and Lupus
Last updated: October 2023
Self-advocacy is something that has taken me a while to practice.
When I first became sick with lupus symptoms I was feeling scared and lost, I didn’t know where to turn for the best. My head was in a daze and it was hard to know who I could trust in terms of healthcare professionals.
For a long time I felt unheard each time I visited my doctor with my never ending list of symptoms. I was made to feel like I was some kind of hypochondriac.
At the time I knew something was physically wrong with me but I would just walk away from each appointment assuming the doctors must be right as they know best.
Looking for a lupus diagnosis
Fast forward sixteen years and I have been through many testing times like this, however, to get my lupus diagnosis I had to advocate for myself and really push for it.
I moved areas and I needed a new doctor, and it was very clear to me that I needed one that was prepared to hear me and understand my concerns. At the time I was doing some voluntary work for a fibromyalgia charity and I got chatting to a lady that recommended a particular doctor that had helped her.
This paid off and I was lucky to get listed as her patient. I felt relief as she listened to me and showed me kindness and compassion. I remember coming out of that first appointment crying tears of relief.
She was such a beautiful soul and I will always remember her in my lupus journey for the way in which she helped me.
Am I just a number?
I started to understand that many people struggled to be heard just like me but this gave me courage and confidence to look into ways that I could help myself.
There were many times where I felt like my voice was not important and I was just a number, however I have learnt to never let anybody shut down my voice, whether that’s medical professionals, employers or even in personal relationships.
How I practice self-advocacy
Having a chronic illness can knock your confidence, but by being able to self advocate it can help to give you your sense of power back. Some tips for advocating for yourself include:
- Research your illness. Be well informed. Look up research and articles that will help you to become more accustomed to your condition.
- Second opinions. If the medical practitioner that you are dealing with doesn’t gel with you, or you don’t agree with something they are telling you, it’s okay to look for an alternative or to get a second opinion. For example, if you're concerned about trying a new medication. Do some research beforehand and chat with your medical team about it.
- Write it down. It’s good to ask questions at appointments, therefore it might be a good idea to write a list beforehand of what you need to say.
- Keep all records. Make sure you keep a record of your test results, appointments and medications.
- Advocating for yourself at work. If you are in employment make sure your employer understands how lupus affects you, and how you may need to take time off for appointments and when you are feeling poorly. Don’t be afraid to ask for anything you may need in order to help you do your job better, such as asking for a more comfortable chair or days working from home.
- Finally, it’s okay to say ‘no’. Communicating with friends and family is so important. I used to pretend that I was coping well until it was impossible. You know your limits and nobody should judge you if have to take time for yourself or cancel plans.
How have you or a loved one practiced self-advocacy? Share your tips and experiences with others below!
How are you most likely to respond when someone offers you unsolicited advice about your lupus?