Why Self-Advocacy Matters
by See Change Ambassador, Sinead Keating
I was diagnosed with bipolar more than 12 years ago at the age of 21, 10 years after my first episode. Since my diagnosis self advocacy has been a central part of my mental health care. Shame, stigmatising preconceived ideas, and judgement about mental illness is, in my experience, still very much ingrained in societal systems – family units, communities, and our mental health services. Learning self advocacy has involved honing my language, feeling confident enough to stop someone when they’re saying something shaming, saying out loud that I don’t deserve blame. It’s still hard but I’ve become very good at it.
In the past year I’ve had a new experience that’s made me look at self advocacy in a different way. I became a mum to twin girls who arrived during the first lockdown. There’s a lot in the experience for me to unpack over time but there are two particular incidents that have settled within me deeply.
I had the support of a mental health midwife towards the end of my pregnancy. I felt very protected by her as she left detailed notes about my care with the staff on the ward I stayed on for three days with my girls. She visited me shortly after my c section. She rang regularly to see how I was. It was a huge relief to know there was someone to help me at the most vulnerable time in my life when I couldn’t have visitors because we were in lockdown. The plan was that I would have some extra help in the night so that I could have a 4 hour block of sleep. Sleep deprivation is torturous for anyone. With bipolar disorder it’s dangerous as it can very quickly bring on a mood cycle. The 4 hours would hopefully keep me safe until we got home.
The first two nights the staff were magnificent helping me feed my girls. On the second night one of the midwives took the girls down to their office for a few hours. I cried with relief.
On the third night no one had said anything about the night feeding so I rang the bell to ask for help. The midwife on duty was visibly annoyed and said “no you can’t have that. You’re going home tomorrow, you need to care for your babies”. I was exhausted, the most vulnerable I had ever been in my life, and I lost my self advocacy voice. The one that would have said “I have an illness, I need help. Please look at my notes, it’s all there”. The wall of shame that hit me was enormous. My hands shook while I was holding one of my daughters. I started to stammer, I felt dizzy and sick, and I began to cry. I’m so grateful for the woman next to me who got out of her bed at 1am to come over to me with her own baby to say how horrible that was and ask if I was ok. She was having such a hard time herself but she was so kind. I wish I had told her properly how much her kindness meant to me.
My whole pregnancy, childbirth and new parenthood experience has been so connected to my sense of womanhood, although of course these are experienced by trans men and non binary people too.
My perinatal mental health plan was of course impacted by covid. It amounted to phone calls with a consultant where I was offered more medication as well as the suggestions of ‘letting go’ of difficult feelings and hiring someone to help with my daughters. 10 months after having the girls, I spoke to the mental health midwife again, who said she was going to see what she could do for me and that there was a clinical psychologist she had in mind. I had no idea that support were available. I felt so relieved. Until a week ago, when I was told I was now too far postpartum to access perinatal clinal psychology.
Self advocacy shouldn’t be necessary. It’s much more than simply communicating feelings or needs. I thought back to all the times I’ve had to self advocate; interrupting a consultant after they said I wouldn’t qualify for a particular service as their responsibility wasn’t ‘hand holding or soothing’, telling my workplace I’m not unprofessional or unreliable when I need to call in sick, responding to a comment that I ‘shouldn’t be aiming to take sick days’, physically walking away from a conversation after being told I just wasn’t around to help when I was ill. My self advocacy mostly fell on deaf ears. I couldn’t advocate for myself to the perinatal mental health services but maybe it didn’t matter. Maybe it wouldn’t have made a difference anyway.
And yet self advocacy has done something immeasurably wonderful for me. Because all those dissenting, dismissive voices I’ve heard are echoes of a voice in my own head; one that tells me my illness isn’t real, that I’m inventing it to cover my selfishness, my laziness, my self centeredness. This voice isn’t true but it’s loud all the same. So when I advocate for myself, when I use my own voice to challenge shaming language, to fight back against systems and people that imply I’m not worthy of being believed, I quieten that awful voice in my own head too.
Self advocacy is not only about myself, it’s to myself. And while I don’t know if self advocacy makes an impression to the person across the table, or at the end of the phone or email, it has undoubtedly made the best impression on me. I prioritise my own needs, I have learned to validate my feelings, I can keep my inner shame voice quieter, and after a long time of struggling with worthiness, I do believe I’m worthy of support.
I wish I didn’t have to self advocate, but I can’t put into words how glad I am that I do.
If you are having a tough time at the moment and need to reach out for support, please contact any of the following
