How I Finally Found My Voice With Chronic Illness

Not feeling heard is a common phenomenon when you live with chronic illness: all the thoughts and emotions and un-screamed screams of frustration, fear, pain, or worry rattle around inside you. The illness I have is from birth, so I have memories of being a small child visiting doctors and being repeatedly examined and told what my mother and I had to do on a daily basis until the next check-up appointment. Even as a teenager I remember being told as opposed to asked, and there was never a space made for discussion.

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There are many ways in which ones voice is suppressed or seemingly disregarded when you live with chronic illness, whether you were diagnosed at birth or later in life and it got me wondering how this contributes to who we become and how it shapes our behavior and feelings of ourself in the world.

The Hamster Wheel

Currently I have some fairly new symptoms and I find myself back in the hamster wheel of seeing different doctors and no one knowing the causes or proper solutions. The frustration of the cartesian model of each doctor dealing with a different body part and none of them connecting the dots to see the bigger picture is so familiar. With chronic illness we slip downstream rushing past doctor after doctor and wondering if we could just stop for a minute and get them all together in the same room so we could truly get to some proper answers. But that never happens so we carry on repeating our story of symptoms to every one feeling almost like we are wasting our limited energy reserves.

A Circus Act

Living with chronic illness we become professional but sometimes failing jugglers, trying to keep all our metaphoric balls in the air that are household tasks, earning income, personal relationships, socializing, and lying on the couch exhausted. We become accomplished artists of time and energy management, but it’s challenging and stressful. If we have an understanding partner or parent we can complain and lean on them sometimes, but oh the guilt! The apologies and explanations we have to give to employers and friends when we are unable to turn up or join in. Rather than excusing ourselves again for our uncontrolled health, we want people to hear how we may be letting them down, but we feel way worse about it than they do.

Corked Feelings

We don’t want to burden friends and family with our struggles and undulating emotions, so we stay quiet with the occasional spilling out when the cork just can’t stand the pressure of what we have bottled up. Where do the rest of our feelings and thoughts go? And what effect do all these ways of feeling unseen and unheard have on us?

The Pyschological Needs of a Human

Not feeling heard is a painful experience, which can make us feel unimportant and lonely. The irony is when we get stuck in these feelings it can make it almost more difficult to connect with others, as well as become a cause for feelings of depression. Living with chronic illness can exacerbate these feelings, which I experienced myself for many years and still occasionally feel now at 44 years old.

Maslow’s Hierarchy of Needs demonstrates how our psychological needs are vital for feelings of mental and emotional wellness and connectedness to our family, peers, and society as a whole. Feeling heard and therefore validated and understood has a big part to play in trusting and relating to others and therefore affects our behavior and sense of self. Due to staying quiet and non-communicative of my feelings, I noticed that my whole personality as a young person was to feel and play the “wallflower” — the observer who felt wholly uncomfortable in any spotlight; the young woman who allowed men in the room to be more important and dictate the way it was going to be (my doctors were all male). I was agreeable and permissive, and still am in some ways now.

How did or does feeling unheard shape your roles in your life?

A sense of feeling an outsider from society and struggling alone was common for me and started to improve when I began allowing healthy expression of my feelings. Sharing your feelings with trusted friends who you know can truly listen and give you validation is an important part of living with chronic conditions, although I know it isn’t easy. This is one of the great things about online communities as well — being able to connect with others who understand due to having similar experiences is powerful.

If you share your feelings with people around you like your partner or family, it’s useful to remember that they won’t necessarily understand (unless they live with illness too), but they do love and care about you so that is what they can offer. If you find you have lots you need to talk about it could be a bit overwhelming for friends and family and you may benefit from talking to a professional.

Self-Help?

There is an aspect to feeling heard that is discussed less, and that is the practice of valuing yourself. When you improve feelings of self-worth, self-friendship and self-love you will reduce your need to be heard by others and find confidence to speak out when you deem it necessary, like with your doctors, carers, or people who unintentionally gaslight you. When you truly feel you deserved to be listened to and find ways to voice your feelings, even if it is through less direct means like journaling, writing, or singing, you will improve your relationship with yourself, your illness, and the world around you. I recognize how exhausting it is to keep explaining to others, so sometimes it’s OK to just find solace in self and those closest to you who care.