I made a few starts to this week’s blog post. And they haven’t gotten far. I started one about sorrow, shame and self-blame, another about anger in response to prying and insensitive questions, and another about the subtle exclusion of the chronically ill from so many facets of community life.
But then I started to worry that I was being negative. I worried that I was holding onto to hurt and not being positive enough. I was feeling anxious- concerned that if I focus on the things that are going wrong then no one will want to read what I write. I was worried about being rejected because of my feelings and my experiences. I was in the process, I realised, of invalidating myself.
So instead I decided to look at how the need for validation can so often do me in. The need for validation and the fear of invalidation.
I have a GP I am happy with. She has a sense of humour, she is pragmatic and supportive. But up until last week I had still not been completely open about the full range of symptoms I experience. I wasn’t hiding things from her but I was worried to some degree of being seen to be overly dramatic, or of being a hypochondriac. Fear of being a fraud. My fear being that if I present with too many symptoms my experience would be dismissed. Am I really sick at all? She looked through the list of symptoms I’d written, asked me a few questions and has referred me to another specialist for review. I am glad, this feels positive.
I live with a largely invisible illness and after four years still only having a working diagnosis. Many of the symptoms I have, and the frequency and length of episodes I experience don’t quite fit. This I think has added to my sense of self-doubt and fear of my illness somehow not being valid or real. The imposter syndrome strikes even in the depth of chronic illness. But my fear of being invalidated does not serve me well. How can I be fully diagnosed if I don’t fully disclose. How can I expect others to advocate for me if I keep quiet. I reminded myself of the role I have taken on, the role of chronic illness activist. In this role I become more able to stand up for myself and for my health and wellbeing. In this role I feel more valid. I feel stronger. In adopting a role, that of an activist I have duties and responsibilities. To challenge and push for change. With this role it is no longer personal, it is no longer just about me and my body. The personal becomes political. And in this space I feel compelled.
But why do I find it easier to speak out, to advocate and to act if it is not just about me or for me. I believe this is something I have in part been socialised to do. To put others ahead of myself, to validate others experiences, others feelings over what I feel, what I know, what I need. It is perhaps a blessing and a curse. It is what motivates me in life- having a cause, a just cause. It is has bought me into contact with wonderful friends and allies. It has helped me to be bold when necessary. It has helped me to help others and to give me a sense of work well done. A sense of purpose and meaning. Am I not meaning enough, maybe not. And maybe this is ok, maybe this is not something I need to change right now. Just acknowledging it seems like a big enough step today.
Creating a role, a sense of meaning in this instance is helping me to feel a sense of purpose and direction. It is helping view my medical treatment, my illness and my health through a broader, social lens. This is bigger than me and I will use my motivation in this role to ensure that I do myself and my cause justice. When I feel doubt, when I fear judgement I brace myself and take a deep breath. Reminding myself that I do this for myself and for everyone else who feels marginalised and misunderstood due to their illness and experiences. I carry with me the weight of self-doubt and I do fear invalidity but I am also learning to be proud and to be bold. Learning not to hide my pain, and not pretend to be well when I am not. Learning to stand tall, even when I am not able to stand. To speak out, even when my voice is shaking.