Chronic illness involves more than physical symptoms – there’s the emotional impact too. Laura McKee writes about opening up to her friends and loved ones.
The emotional impact of my chronic illness is something I spent years hiding from. When people know I live with constant, chronic pain, they ask how I stay so positive. To be fair, I am genuinely positive most of the time, but I often ask myself - how? I'm mostly bedbound. In fact, as I write this, I've spent weeks locked in a cruel cycle of pain, often lying awake until five in the morning.
I must admit, it's all starting to get to me.
This much pain is so emotionally draining, and I have a nasty habit of trying to hide how much it bothers me.
Recently, I've been trying my best to work on this. I’m slowly learning how to face the impact of my chronic illness by talking truthfully about how much pain I’m in. I can accept that it's "okay not to be okay," especially when I'm in this much discomfort.
But something is still bothering me. Why do I feel the need to force positivity with my illness to somehow “cover it up”? Why do I always need to look like I'm coping with chronic pain, even when I'm in agony? Pretending to be "fine" doesn't make me healthy. As coping mechanisms go, it may even be more damaging. So, for this piece, I've decided to do an investigation into my own coping habits. By facing the truth, I hope that I actually come out stronger and set myself realistic ways to get by.
I'm sure that my inner-child drives a lot of this behaviour. It's the most natural thing in the world for adults to rely on childhood experiences in later life.
Yet, sometimes, the way we coped with emotions and illness as children doesn't translate well when we get to adulthood. I need to look deep into my past and discover new insights that help me move forward. I want to be able to ask for help from my support system without feeling guilty.
Learning it’s “okay not to be okay” when coping with chronic illness
A while ago now, I chose to write about my "chronic pain journey". I wanted to be authentic and tell my readers the good, the bad, and the ugly sides of life with a chronic condition. Reading back, I see that I've always tended to hide any negative emotions related to my illness. Being optimistic has been my default setting for years - I think it's my only concrete way of dealing with all this.
Nowadays, I'll admit that I don't always have a sunny outlook on my pain. What’s been far more difficult is knowing it’s okay to feel negative. When I became ill, the pain ate away at the Laura that I was. I was understandably depressed, but a voice at the back of my mind told me the show had to go on.
It was hard to accept the impact chronic illness had on my emotions, and I struggled to open up to anyone but my husband. Though times were dark, I felt I shouldn't dwell on feeling sad, anxious or lonely. Instead, I felt shame and guilt for having these normal, intense reactions.
Truthfully, my positive persona meant I wasn't being honest about my reality. I wasn't being what I had wanted to be all along - authentic. In fact, I could even argue that I was misleading others. The forced positivity I used to help me cope with my condition was becoming toxic.
My intentions were to be motivational. I wanted to show everyone there is always light, despite the circumstances. And there is light out there, but I wasn't sharing my real journey. I didn't want people to judge me, though it was me who couldn't accept my illness’ impact on my emotions. I didn't know that it was okay to not be okay.
So, the more optimistic I was on the outside, the more exhausted I felt within. I was piling all this pressure on myself to share more, to give more, but to always seem happy. The more I wrote about my chronic pain, the more I was called an "inspiration", which jarred with me.
I needed to find out where this internal sense of pressure was coming from, and I needed to know why I was so quick to pile on the guilt when it came to my condition.
How my inner child affects the emotional impact of my chronic illness
You may think all this self-reflection is strange, but the physical and psychological effects of chronic pain meant I could no longer live a "normal" life. I had spent so long forcing positivity about my condition, my real feelings were buried beneath an avalanche of guilt and shame.
Many adults follow the same patterns all their lives, but mine were ones I had to break. I needed to use my inner child and find the connection between my pain, illness, and emotional trauma.
As I looked, I realised many childhood experiences had followed me into adulthood. Even now, when I feel unforgiving pain, all I want to do is curl into a ball and be comforted. Many adults recognise this for what it is - the echoes of feeling poorly as a child and wanting a loving parent to hold them. To me, however, these natural feelings triggered an overwhelming sense of shame.
As an adult with a chronic condition, I thought that raising awareness meant I had to be happy all the time. I told myself that, logically, the more I forced positivity through the pain and illness, the more people would listen to the tale I had to tell.
But now, as I look deeper, I realise logic had little to do with it. All along, nasty thoughts were simmering under the surface, telling me I was a hypochondriac with no actual proof I was ill. I knew these thoughts were directly linked to frequent illness as a child and the resulting emotional trauma.
Since working with a headache specialist, I know I had undiagnosed migraine from twelve years old. I needed to take so much time off school, my classmates soon singled me out and bullied me.
They quizzed me repeatedly about where I had been and what I was doing. I remember one classmate claiming they'd "caught" me walking to the GP surgery when I should have been at school. They thought I was playing truant, but my mother didn't have a car.
While the other pupils called me a hypochondriac, my doctors weren't much better. They insisted they couldn't find anything wrong with me, so I told myself that adults didn't believe I was sick and in chronic pain. During my twenties, my negative emotions were still there, never far from the surface. I still had undiagnosed migraine, along with a massive fear of becoming an "ill adult".
Later on, I developed another headache-related condition and became stuck in a constant pain cycle. Sure enough, my inner child was running the emotional side of my illness. She wailed that I was becoming too poorly and I was a burden to my husband. Thankfully, I was able to quash my fears enough to talk to him and change the narrative.
I don't blame anyone for my experiences with migraine during school and childhood. The trips down memory lane aren't about pointing the finger; they're about managing my illness and emotional trauma. I wasn't believed then, I tell myself, but I'm believed now. Accepting, listening and forgiving myself for the emotional impact of my chronic condition is down to me. I need to change the stories I've been telling myself and focus on coping with my illness and pain in the future.
“There are times in our lives when we have to realise our past is precisely what it is, and we cannot change it. But we can change the story we tell ourselves about it, and by doing that, we can change the future.”
― Eleanor Brown
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How my support system helps me cope day to day
When my pain first became a constant in my life, I felt misunderstood by others and alone in having constant headaches. I wasn't coping with the emotional side of my chronic illness, so a good friend suggested joining a migraine support group. When I found an online group, I soon realised I wasn't alone. My unresponsive pain was called Intractable Headache.
When each professional questioned my diagnosis as "just a headache," I felt I had a safety net in my support groups. They understood my self-doubt, provided a safe space to rant, and let me connect with others in chronic pain.
Soon, I found my purpose in one group, where I focused on raising awareness of migraine.
My friends and family could see the agony I was in, and they helped me understand that my loved ones cared. As I opened up and shared my emotions around my illness and pain with them, my communities began to link together as one. The support groups kept a door open for new members, and I continue to make friends with people who've gone through the same as me.
Not all of my friends stuck around, but the ones who did accept me as I am. They don't lose patience when I cancel on them. They sit with me on my bed, get their own drinks, and tell me off when I'm doing too much. They gave me the hope and support I needed when I was diagnosed with a rare brain condition a few months later.
They may not fully know it, but my friends and family play a vital role. Together, they lessened the emotional strain of my chronic illness and stopped me from falling apart. For the first time in a long time, I actually felt believed. When a group of my mum friends offered to bring my boys home from school, I felt guilty... but so, so grateful for their help. I couldn't cope without them.
Then, when I was spending most of my time in bed and my husband almost buckled with the pressure, I contacted my GP. I was awarded carer support, and now I have a caregiver who's like family. She provides so much crucial, practical care, my loved ones feel supported. Her help has finally given me room to connect the dots between my illness and emotions. I, too, am starting to feel some peace.
All this support means I know somewhere is always there for me, my husband, and my boys, whatever, wherever and whenever needed. Every person who's stood by me has helped my family do more than just survive. Thank you, everyone, for all your help.
When I finally stopped forcing positivity about my chronic condition, an enormous pressure lifted itself from my shoulders. The strong emotions that come with illness can be overwhelming, but I have the confidence to see through the darker days.
My inner child still cries and stamps her feet, but I've learned how to soothe her. She sobbed because I ignored her pain, just the way a real child would. Now, though, I hold her hand and, together, we look out towards the future.
I’m coping with the physical and psychological effects of my illness the best I can. So are my family. Every night, my loved ones tell me as I'm about to sleep: "you did it, Laura! You got through another day!"
I finally know what it means to be authentic. And I'm grateful.