The Reality of Living with a Chronic Illness
The Reality of Living with a Chronic Illness
Since I was a teen I’ve been living in constant pain. I can’t pinpoint the exact moment the pain started to take over, but by the time I was 18, I felt like an outcast. It’s not easy living with a chronic illness and it feels lonely, really lonely.
After going through one of my worst flare ups this year, I wanted to talk a bit about what it’s like living with a chronic illness.
The Early Days
Living with a chronic illness was never on my list of life’s goals. I don’t suspect it’s on anyone’s. But here I am, 28 years old living with Fibromyalgia and Chronic Fatigue. I remember always feeling out of place, like there was something wrong with me specifically because somehow I had done something terrible in a past life.
Looking back I know that’s not the case, but as a 16 year old who feels like their body is breaking over the simplest movements, its not so far fetched to think that. I knew I wasn’t like my friends, that my body worked differently and I think that’s why I tried extra hard to “show boat”.
I’ll admit, I wasn’t the nicest person as a teen. It felt like I always had to do one better than all my friends. Drink that bit more, say something more outlandish, take the dare too far. Looking back, I think it was my way of saying “I can do everything you can, but I’m better at it”. I wish this wasn’t the case, I wish I didn’t feel so inferior within myself or insecure to act like that, but I was.
It was hard feeling so insecure within myself
I didn’t want to be that friend who couldn’t keep up. That friend who complained about being constantly sore, who would put a downer on the party. Keeping that part of my life hidden was top priority, I couldn’t let my mask of “perfectly healthy” slip. Or more so, I couldn’t let anyone know that on top of my depression, my body was also broken.
I was already met with confusion and jokes at my expense because of my mental health. Many times I was labelled “the crazy one” or the “psycho”. So, there was no way anyone was going to know about my struggles with pain and feeling inferior.
Coming to terms with my Chronic Illness
It took a lot of tears and breakdowns, plus plenty of Dr visits along with seeing a specialist to come to terms with my chronic illness. Getting my head round it all was, it was hard. But finally having a name for it all, it helped a great deal.
I did struggle for years before my official diagnosis. It wasn’t until 2016 that I saw a proper specialist who diagnosed me. So before that was a lot of turmoil not knowing what was wrong. I am super thankful that I did eventually get the proper care and support , but it was a journey to get there.
Living with Chronic Illness
Living with chronic illnesses isn’t easy, there’s a lot of day to day life activities that I can’t easily get up and do. It’s especially hard being the mum of a hyper child who loves to be on the go constantly. With my fibromyalgia I can’t lift anything too heavy, or walk for long, or just get up and go in the mornings. My life revolves around adjusting to see how my body is every single day.
Little tasks such as making coffee can be hard, if my hands hurt or are swollen I can’t lift the kettle. This also makes getting little bears breakfast and lunches made difficult. There are days the pain is so bad I can’t walk or I’m too exhausted to even lift my head.
But, I have to keep going because I know I have to show up each and everyday for my son.
The Progression
Although I’ve lived with the pain since I was a teen, nothing prepared me for the progression of it getting worse. No one ever told me that as I got older, I would experience new and spirit breaking pain. Things I could easily do like have full days out now require a lot of prep and medication just to be able to cope. And even then I still come home feeling worse than ever and need rest days to recharge.
I’ve noticed that my hands and legs get it a lot worse now. Those are the first to become swollen and painful on a bad flare up before it travels my whole body. I never used to experience the pain much in my face but now it often feels like i’ve been punched repeatedly.
Not only has the pain increased, the way it affects my mental health has also progressively gotten worse
There are a lot of ways having a chronic illness affects my life but the worst has to be the toll it takes on me mentally.
Having depression already feels suffocating at times so when a flare up is stacked on top it can feel like the world is crumbling around me and I can’t take it anymore. There have been times i’ve locked myself in the bathroom for over an hour just to cry on my own. It’s moments like this that often lead to feeling like I shouldn’t be here anymore. I do get out of this by bringing myself back to reality and thinking about my son, but it’s hard.
The way it seeps into all aspects of life can be really hard to come to terms with, it’s not easy and a lot of adapting has to be made. I think that’s what a lot of people don’t understand. If they can’t see the way it impacts those that have it, they don’t believe it’s real.
Although it’s hard and I wish I didn’t have to live like this, I’m thankful for what I’ve learned living with chronic illnesses.
I hate having flare ups, I hate that when people only see me on my good days they think I’m “cured”, I hate that I have to adapt my life around how my body is feeling, I hate that I can’t hold my son some days, I hate that I cry so much, I hate that I feel broken, I hate that I can’t just live life without having to second guess everything. But what I hate the most is knowing that my son sees it all.
Through it all, Little Bear is my driving force
I always make sure I’m present for my son, that I don’t let chronic illness control my life because I know what it’s like to have a mum who is always “sick”. When I was younger, most days my mum was either in bed or laying on the couch. She wasn’t a bad mum by any means, but she had a lot of different conditions and it impacted my childhood.
Growing up I resented her because I though she was doing it on purpose, that she couldn’t be bothered being a mum. I now know that wasn’t the case, but I did at the time and that hurts knowing I judged her so harshly. So, I think I always have that at the back of my mind because I never want little bear to grow up thinking I couldn’t be bothered or see me in bed all the time.
Although I know now about my mum and I regret ever thinking bad of her, I have a fear over becoming that myself. It’s silly because it wasn’t like she done any of it on purpose, It’s my own internalised trauma that I haven’t sorted through yet. It’s both a blessing and a curse as I do make sure my son is always put first and my conditions don’t impact him. But I can overdo it which leaves me in a bad place.
Living with Chronic Illness isn’t easy
It’s not easy and it can feel extremely lonely. Never knowing when it’s going to happen or how bad it will be keeps me on edge. When it gets tough, it’s really tough! But I’m proud of how far I’ve come, I’m proud that I don’t let it define me, that I don’t let it overtake my life.
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I find that people who don’t suffer from chronic illness rarely understand what it’s like to live with it. I had a colleague ask me last week wasn’t there something I could take for the fatigue. I mean, I’m pretty sure I’d be on it or would have tried it if there was. And the “Have you tried exercising?” question… it doesn’t even make sense!
So true, unless they are living it themselves they won’t understand. I would never wish it on anyone but sometimes I wish there was something where they could feel it for a couple of seconds just to understand that it’s not as easy as “exercises” or “get fresh air”
This is the most relatable post I’ve ever read, right down to the teenage years! Thank you for explaining it so well. I’m so sorry that you have had to experience it though.
Thank you so much 💕
This was a great read! I totally understand why you acted like that as a teen, it’s the worst time to be, or feel different. In regard to the mum thing, my Nan had what was manic depression back in the day, a lot of my childhood when we visited she was laying on the couch in a dressing gown, it caused loads of rows between her and my dad, who thought she should ‘make more of an effort’. About 10 years after my Nan passed away, my dad was diagnosed with Bipolar Disorder and it was only then that he understood x
I agree, the teenage years are so important and when you’re going through so lucky change and medical issues it feels so suffocating and you don’t want it to be true. No one really understands until they live it but I wish no one had to go through it at all. Life would be better
Thank you for sharing your struggle. I would like to ask what do you mean by “Things I could easily do like have full days out now require a lot of prep and medication just to be able to cope?” Do you mean traveling or going to the zoo? I’d be interested to see what that is like for you. I write about travel & my mental health issues. Like the time I rode a zipline and had a panic attack halfway through because my mind decided to go “imagine if the line broke & you fell to your death – who would feed [my dog] Willow?” So that kind of perspective from others who deal with a chronic illness is always fascinating to me.
xoxo Essie
So with things I could normally I mean days out weren’t a big deal, we could make the plans that day and go but now I have to have fair warning so I can save my energy, mentally prepare myself and make sure I’m looking after myself before it because walking causes so much pain now it’s unreal. I still try, I still go and do the things but I can’t easily get up and go anymore, it feels like a mission and once I’ve done it, I need a couple of days rest to let my body get back to “normal” which is less pain than activities cause.
I’m sorry to hear you’ve been battling with this since you were a teenager. I’m happy to hear you were properly diagnosed and you’ve become a stronger person because of it. Thank you for sharing your story, I am positive it will inspire and help others who are experiencing the same thing.
Thank you. It’s been tough but I’ve got through and for that I’m proud.
Thanks for sharing your story Jordanne. I completely understand the struggles you faced leading up to your diagnoses and the struggles you continue to face. I was a nightmare teenager prior to my diagnoses. I suffer from two chronic illnesses myself and my biggest struggle for me has to be other people not understanding. Have you heard of the spoon theory? It’s a great way of explaining how we have to ration our energy throughout the day and any extra activities have to be planned for or made up for in the days that follow! I’ve found this really useful when helping my friends and family understand. I hope you’re feeling well these days and flare up free 🙂
Thank you Vourneen, it’s so hard when there isn’t anyone around who can relate or know what you’re going through. I have heard of the spoon theory, I thought about it for a whole but I’m one of those people who would get very confused easily when it comes to it, one of my worst traits is pushing through until I physically can’t do anything so I need to work on boundaries first
Hello Jordanne, thank you so much for sharing this post and your story as I think it will help a lot of people who are going through the same thing. I personally don’t know much about chronic illness but this post has opened my eyes, thank you for sharing! Alicia
Thank you for the kind words 💕
I’m so sorry to hear about your daily struggles.
I’m genuinely blown away by how much you do despite the pain you endure.
Sending you all the best.
Thank you so much Rachel for your kind words, it means a lot 💕
Hugs to you. Two of my good friends have fibro myalgia. Both are caregivers, which is a physically demanding job, which I would think maybe it would make it worse, but their heart is so big, they keep working. One of my friends had a kidney flair up, possibly due to fibro myalgia, I was so worried about her. She is doing better. I hope they find a cure or better meds.
From another sufferer, a big hug!!! “I hate having flare ups, I hate that when people only see me on my good days they think I’m “cured”, I hate that I have to adapt my life around how my body is feeling”. Yes, I can totally relate to this. After years of feeling ill and being in pain, I was diagnosed with autoimmune diseases over 30 years ago – it took a long time to get diagnosed and the doctors all thought it was in my head. It was a relief to get a diagnosis and to actually be given some medication that helped. The Fibro crept up on me about five years ago after a bad fall. It was what they call a ‘trigger event’. So more pain added to existing pain. People always said I was ‘duff’ or a heap. Lately I have started telling people who go down that road that actually I am really strong. Because I live with this and I still manage to do things, albeit at my own pace and maybe not perfectly. I am a strong person. And so are you!
Living with chronic fatigue myself this post really spoke to me. To see someone who really understands what it’s like is heartwarming as I realise I’m not alone. I’ve been told “why are you tired? You’ve got no reason to be” by my own family members so it’s really tough. I’ve gotten so good at masking my fatigue I’m now struggling to break down that mindset. I’m now looking at starting a business that I can control rather than keep on with a 9-5 that’s exhausting me. Thank you for this post, and keep going warrior! Xx
Thank you for sharing. It’s so important that people coping with different illnesses and disabilities are given a voice and should be heard.
As someone who has a complex congenital cardiac condition and 2 children who have cerebral palsy I can have empathy and sympathy.
You’re doing so well and this blog is testament to that.
Sending lots of positive vibes and hugs x