5 Tips to Start Accepting a Life with Chronic Illness
Get comfy, grab a cup of tea. This ones a bit longer but I'm sure whether you yourself have a chronic illness, or are supporting someone who does, this might give you a few nuggets to take away (no i'm sorry, no actual edible nuggets, unless you can digest wisdom!).
18 months ago, after 2 years struggling with symptoms, I was diagnosed with Ulcerative Colitis. An auto immune condition affecting the colon. 6 months later after a severe and untreatable flare up, I was admitted for an emergency total colectomy leaving me with an ileostomy & the beginning of the journey to living with a j-pouch. In this time, I have had various surgeries, both taking steps forward, and emergency ones which have felt like steps back. Initially, I think I seemed very optimistic about the diagnosis – in reality and with hindsight, I think I perhaps hadn’t quite processed, or comprehended what had happened and how much my life would be changed.
I have always thought of myself as a very focused, pragmatic and optimistic person – hell, when you have to talk about poo as much as I do, the only way to get around that is with laughter! My condition isn’t something to be embarrassed or ashamed about, and over the last 18 months I have realised a few things I wish I had seen when this journey began for me.
Knowledge is power
Firstly, and I couldn’t advise against this any more - don’t self diagnose. Dr google does not know best. But when you do have a diagnosis, find the official websites, read medical papers, work hard and find out what you are dealing with – form your own opinions. Regain your power.
Ask questions, as many as you want. I’ve realised that when doctors see that you are interested in your care, you are keen to know more, they are willing to share more with you, knowing you are informed and want to be able to make the clearest decisions. Make them aware that you want to be part of the decisions, doctors know what they are talking about but make sure to ask to have time to think about things, don’t just take what they say as gospel. Have a voice in your medical team.
Surround yourself with compassionate, positive people
I have been incredibly lucky on this one. Over the past few years I have made some of my greatest friends, people whom without, I’m not sure how I would have made it through the hard times. My wine and cheese ladies that bring me side splitting laughter, are also right there, giving me an arm to lean on as I stagger a few steps post surgery. The Yoga community in Edinburgh has brought me some of the most inspirational and supportive friends. And I can’t not mention my wonderful family, there every step of the way.
Really look at where your energy goes – conserve it! My Dad always said there were two types of people, the radiator, and the sump. The radiator (does as it says) sends out energy, lights you up, makes you feel full to the brim! The sump on the other hand, is an energy drain, they don’t bring you joy or light you up but instead bring negativity to your day. You don’t need the latter. You really don’t – you have enough going on. I know that some of the people who have drifted out of my life over the years would fit into that category and so I am content in knowing the close circle I have now, all light me up and I hope I do the same for them.
Since my diagnosis, and my openness, particularly on social media about my health, people did fade away. This will happen. For some, for whatever reason they don’t want to hear about it, it’s too much for them, but that’s ok. It acts as a bit of a subconscious culling process and leaves the true gems behind. The ones really there through thick and thin.
Find a good councellor
Someone told me that finding a good councellor is like finding a good hairdresser. Unfortunately, it won’t always be the right fit first time. But don’t let that put you off. I always thought of myself as ‘not the kind of person who needed a councellor’ – there’s a problem there before I even started! I thought it was a sign that I couldn’t cope, that I was weak. Now however, I am firmly of the opinion that everyone should have one. Whether you have been through something traumatic or not (I can’t really think of anyone I know who hasn’t had something difficult to deal with), having someone with no emotional ties, who doesn’t have any other invested interest in you and just hold the floor for you to speak openly, is hugely beneficial. We have so much to deal with on a day to day basis, through some sort of life changing experience on top, whether that be a relationship breakdown or illness, on top – that’s a lot to try and compute on our own!
I realised that I had tricked myself into thinking I was coping really well after my diagnosis and first surgery; treating it like a business transaction, not getting upset, just getting on with it. It took a VERY long time after I got my ileostomy before I actually cried. Through counselling I realised I had become completely disengaged and unable to relate to people around me because I had built this barrier. Once I broke that down, did a lot of crying and acknowledging the severity of what I’d been through, I started to feel a lot better. It’s a long process, but don’t be afraid to start it!
Make the most of the good times & really live!
When you have a chronic condition, it’s par for the course that you have months at a time feeling strong, fit and healthy, and others when you feel less so.
I can’t stress enough how important it is to really live. Choose to not let the disease beat you and really make the most of the time you feel well. Workout, enjoy food & nourish your body, have an eventful night out, meet friends, really make the most of it and enjoy yourself. You choose to live, so don't let it keep you indoors, away from social situations. Our mind is fantastic, it protects us from dangerous situations, but in doing that, it holds onto those past experiences and tells us to stay in, not to go to that event or location, 'just in case!'. Trust you will be ok, and live!
Accept that everything in our lives is transient and particularly with our health, can be unpredictable, so this freedom inevitably will at time have to be put on hold. But again, transient, those points of feeling low or poorly will pass and you will pick yourself back up and get back to living a full and healthy life. Choose to live, and really make sure you do. Enjoy every second, the beautiful sunrise, a great hug, someone bringing you a cup of tea at work. While not every day may be great, there can be greatness found in every day.
The biggie! Don’t compare your life to that of the people around you
Probably the most important piece of advice I can give is one I am really working on and will be particularly relatable for anyone remotely around my age. It’s so easy, when you feel like so much has been taken away, or changed in your life as a result of your chronic condition, to look at other people around you, with stable jobs, more secure earnings, going on holiday or getting engaged, and think – oh sh*t I need to get a move on! ‘What the hell am I doing just sitting here?’ ‘Jesus they’re younger than me and look at that great job they’ve got.’ ‘God I wish I could commit to going away for a couple of weeks.’
The reality is, particularly during the first few years of diagnosis, you will go through a lot of different meds, procedures, hospital stays, time off work – things that need to happen to steady your condition in the long run. I won’t lie, it’s incredibly frustrating, and probably that feeling of loss and mourning for the life I thought I would have at 27 has been the hardest thing to deal with. But you are on your own journey, and a hell of a one at that! There is simply no point comparing your life to others because you are probably dealing with something that 90% of the people you know can’t even comprehend! They may have what from the outside looks like a swanky job, a fancy flat, or the magical ability to spend months travelling without earning, but you, you wonderful creature, are learning a whole lot more about who you are, what you are capable of and what really matters to you – things that will only propel you forward. You are destined for greatness, you might just take a slightly less travelled route.
Paddle your own canoe I say!