7 Ways Chronic Illness Affects Your Life
Living with a physical or mental illness is never an easy thing, and throughout my own experience with a chronic heart condition & anxiety, I became aware of what kind of challenges those with chronic illness face each and every day. Below I have listed 7 of the many ways that chronic illness effects daily life. If this is you, please know that you are not alone and that you are doing an amazing job. 💕
1. LEARNING TO MANAGE SYMPTOMS THAT MAY NEVER GO AWAY
I resisted my heart arrhythmia symptoms SO much that it caused me even more distress. I hated them. I literally resented my heart. I talked about it as if it were a separate entity that was ruining my life.
I wasn’t seeing friends, I wasn’t going out, I was actively avoiding anything that involved being social and having to pretend that I was OK.
I was living on edge, just waiting for the next episode. I was so scared of having an episode that I had literally stopped living my life.
I. Just. Wanted. It. To. Go. Away.
My condition was controlling me. I knew this had to stop when after the third operation I was still symptomatic, and the realisation that SVT and ectopic beats may be a permanent part of my life really kicked in. I knew I had to learn how to accept my situation and my dicky heart if I was ever going to be happy. This wasn’t an overnight process, it took time and a lot of effort, but it was totally worth it, because the alternative was pretty awful.
I had to learn how to accept my heart condition as a part of me, just like any other part of me. I had to stop fighting it and wishing that things were different all the time. I had to accept the fact that my condition may never go away, and somehow be ok with that. To not let it control my life and reclaim my quality of life.
This meant I had to significantly reduce the amount of energy I was giving to it every day; every moment.
I didn’t have to be free of SVT & ectopics to be happy – I had to be free of my obsession with it.
I know it’s not that easy to let go of the sadness or pain that your condition causes you, and I’m not saying you’re not entitled to feel all those things; you should always allow yourself the space and self-compassion to process your emotions and pain. But just never allow yourself to get stuck there.
2. FEELING FRUSTRATED OR SAD ABOUT PEOPLE’S LACK OF AWARENESS/UNDERSTANDING.
I will start this one by saying that not everyone will understand what your condition is, what it means for you, and what it is like to live with it every day. And those people may even be the ones closest to you, which sux!
I cannot tell you how many times I stood there attempting to explain SVT to someone whilst completely aware of their blank facial expression staring back at me. A lot of people hadn’t even heard of SVT before, and a lot just couldn’t understand how I had suddenly developed this condition at the age of 30. I quickly learnt to just do my best to explain things in a way that others could understand it, and not get too much into detail. I also found it helpful to point people who were wanting to understand more in the direction of YouTube clips that showed or explained my condition better than I could.
People would often forget, and continue to offer me alcohol, coffee and ask me to play sports or go running with them (all the things I couldn’t do). At first I was hurt by this, but then I realised that they didn’t mean anything by it, they just didn’t understand. And that was ok. They weren’t living it like I was. I had so many special people in my life that did understand and were there for me every step of the way, and these were the people that I focused on.
Now your condition may not be like mine; for example, it may be something like endometriosis where the people around you may continue to ask you when you’re having a baby: or tell you that they understand because they also have ‘bad’ period pain. Or it could be depression, where your well-meaning friends and family might say things like, ‘Cheer up’ or ‘What have you got to be upset about?’.
Whatever your situation, just remember that not everyone will understand, and that doesn’t mean they don’t love you, sometimes if someone hasn’t walked in your shoes then they can never fully understand.
3. DEALING WITH ADRENAL OR CHRONIC FATIGUE AND ITS ONGOING EFFECT ON THE BODY
Sometimes having a chronic illness places a lot of stress on our physical and emotional state and triggers a whole host of other problems; which was definitely the case for me.
My SVT & tens of thousands of daily ectopic beats triggered a massive amount of anxiety for me. I was in fight or flight mode 24/7. No exaggeration here. I was so completely on edge that I was literally shaking from all the excess adrenaline and cortisol pumping around my body every day. This wasn’t a sustainable state to be in, and pretty quickly it started to have a detrimental effect on my body. I lost a lot of weight, my appetite shut down, and I became very weak. As a result, I had no energy and couldn’t do even the most basic of things like the grocery shopping or taking the kids to school.
The flow on effect of having SVT was pretty nasty for me. My nervous system was completely shot.
I had to learn how to heal my body from the inside out using food and natural remedies, as well as learn how to get my anxiety under control. I also had to accept my situation and be kinder to myself as I was constantly berating myself over not being able to do everything I normally could. Once I did this, things started to improve a lot and my body began restoring itself. Once I reduced the large stress load, my body could do what it always knew how to do and begin to re-balance itself.
If you are suffering from chronic or adrenal fatigue, please be kind to yourself, I know that it can be frustrating, but your body needs your love.
4. LEARNING YOUR NEW LIMITATIONS, BEING UNABLE TO DO THINGS YOU ONCE ENJOYED
For me, there was a pretty huge adjustment to my lifestyle after my diagnosis. I was quite healthy and fit before SVT and had always been very athletic and active.
Suddenly, I had so many restrictions on what I could and couldn’t do, and this sucked. I couldn’t do any cardio exercise because it triggered my SVT, I missed exercise so badly – I missed the feeling of breaking a sweat and having endorphins pumping through my body.
I couldn’t drink alcohol, which isn’t such a bad thing really, except for the social exclusion it caused and the embarrassment of always having to say no to a glass of bubbly with friends. There were days where I just wanted to sit on the deck with my hubby and have a glass of wine like I always had, but it just wasn’t worth it.
I had to learn which foods triggered my symptoms and try to avoid them, as well as avoid overeating in general. I couldn’t drink coffee or caffeinated drinks. I couldn’t take cold and flu medicine, sinus tablets, stomach pain tablets or certain antibiotics.
–Add to this the huge limitations that having anxiety had already placed on me, and I was a pretty miserable girl!
I knew that things could be worse, but that didn’t help the fact that I missed my ‘old’ life, and the old me who could exercise, drink, eat & do whatever she wanted to.
There was a bit of acceptance and self-love that had to happen before I could stop resenting all of this change. I had to accept all this as my ‘new normal’ and rephrase the limitations. Take not drinking alcohol for example – instead of saying to myself ‘I can’t drink’, I started saying ‘I choose not to drink’. Not drinking alcohol and eating healthy is not a bad thing, a lot of people choose to do it without my condition for their health and wellbeing. So I started thinking of it from that angle instead of being restrictions that were imposed on me.
Most of the discomfort here comes from resisting change and trying to control the situation. But the key is to try and accept your new limits with love and self-compassion.
You’re doing the best you can, and that’s enough.
5. HAVING YOUR RELATIONSHIPS AND FRIENDSHIPS AFFECTED BY YOUR CONDITION
After I became ill, friends fell away and some of my relationships changed. This was for many different reasons, some because they just didn’t understand or know what to say to me, so they just avoided me. Others were so caught up in their busy lives and we just didn’t stay in contact once I was too unwell to make any effort. Once I was unable to go out drinking or partying, a lot of friends fell away because I didn’t fit into that lifestyle anymore.
But all of that was totally OK, because one positive thing that came out of all this was that I got to see who my real people were, who really cared for me and loved me for who I was, and I focused my love and energy on those special people.
Another thing that changed my relationships was that when I was going through so much pain and trauma, I found my tolerance for bullshit started to lessen, and friends that did nothing but whinge and whine about trivial things began to really get on my nerves. I found myself avoiding the people who complained, bitched or focused too much on material and superficial aspects of life. This might sound mean! But essentially, I was trying to protect what little energy I had left during that time.
One of the biggest reasons my relationships shifted though was by my own doing: I was shutting a lot of people out when I was really unwell, I was so embarrassed and so fragile that I didn’t want anyone judging me or seeing how sick I was. I now regret this, but I have learnt a lesson from it, and that’s that it is completely OK to be vulnerable and accept help.
On the other hand, some of my relationships were actually strengthened during this time. My bond with my beautiful husband only became stronger; even though I had feared the opposite would happen if I let him see me so weak and vulnerable. My family and I became closer as I learnt how to let others help me when I couldn’t help myself.
There were so many special and beautiful friends who rallied around me and gave me so much love and support, which I will be forever grateful for. I got to see just how beautiful us humans can be. So, don’t be sad if your relationships shift and change throughout your journey, it is completely normal, and those that are your ‘peeps’ will always be there.
6. INTERFERING WITH YOUR WORK/CAREER
My condition was unpredictable, there was no rhyme or reason to when an episode would hit. Sadly, this meant that there were a couple of times when I was at work that I went into SVT. Pretty much all of which I was on my own on a night shift (of course). It was incredibly stressful and started to weigh on my mind before each shift.
I also suffered badly from low blood pressure and my job involved standing and rushing around for up to 10 hours a day. I started to feel guilty for taking time off when I was unwell, as well as for my fortnightly check-ups. Add to that having three heart procedures in 10 months & that meant that I was having to take a lot of time off.
I felt terrible, like I was a burden to my boss and colleagues. They probably didn’t feel that way, but it was how I felt.
I ended up resigning before my last surgery, as it was just too much pressure worrying about a job as well as everything else that was going on with me. It was the right decision, but it made me sad because it was just another aspect of my life that my condition had affected.
This was another situation that I needed to accept for what it was. Accept that it wasn’t within my control, that I couldn’t change it, and so there was no use berating myself over it. The reality was that I had to take time off to focus on my health, and there was no reason to feel guilty about that, I did what I had to do.
7. LIVING WITH AN INVISIBLE ILLNESS THAT NO ONE CAN SEE
This was a BIG one for me. For many different reasons.
Firstly, there is the obvious issue that those around me couldn’t see my illness, so they would sometimes completely forget – and it also made it very hard for them to relate to what I was going through. This made it quite lonely sometimes, and I suffered in silence a lot. I recall going into SVT whilst chatting to a group of girlfriends and not saying a word about it, just quietly excusing myself and running off to the bathroom on my own.
Other people nearly went the entire two years without knowing that I was even sick! And if I happened to mention it, they would be completely shocked and say ‘Oh my god, I had no idea! You always look so healthy and happy!’.
For me, a huge downside to having an invisible illness was the unfounded guilt and pressure I placed on myself. Because I didn’t have something obvious like a broken leg or arm, I somehow felt like I should be doing more, and felt guilty for resting or taking time out. I felt less entitled to slow down, like people would judge me as lazy, even though that was completely untrue – it was how I felt. This made me pretend I was fine and push myself a lot more than I should have.
It’s important to remember that whether your illness is physical, mental, visible or invisible, it is no less important or valid than any other.
If you are struggling with the effects of physical or mental illness, know that you are not alone -there are so many others out there who are experiencing similar challenges. Remember that it isn’t easy living with chronic illness, and you are doing the best you can with what you have, and that is always enough.
So be kind to yourself & don’t give up on that amazing body of yours! 💙