Navigating Life With Chronic Illness

Navigating Life With Chronic Illness

I recently discovered A Chronic Voice’s linkup, where people share their thoughts and experiences on different topics on navigating life with chronic illness and it inspired me to join in. As lockdown ends and life returns to normal for everyone, I’ve been doing a lot of reflecting on my journey and how I’ve been navigating life with chronic illness so far.

So here are my reflections for this months linkup on how chronic illness has changed my perspective on aging, how it has transformed me and what I do to help with navigating life with chronic illness each day.

 

navigating life with chronic illness: Aging

  • Go to uni at 18
  • Graduate at 21
  • Climb the career ladder
  • Buy your first home
  • Get married by 25
  • Have kids by 30

That’s the timeline the world tries to convince us we have to follow as we get older. We’re surrounded by external pressures from friends, family, social media and society telling us who we should be, what we should achieve and when we should achieve them by to be worthy and for our lives to have meaning and be of value.

However, studying, socialising, working, keeping busy and always striving for more are the same things that chronic illness can take away or limit your ability to do. It forces us to embrace a slower way of life that goes completely against this:-

  • Prioritising rest,
  • Cancelling and rearranging plans,
  • Not being able to do as much as others.

It can put you on a different path to others that so often causes us to be made to feel as we get older and the months and years pass by like we’re falling behind, a burden, are of less value and inferior.

navigating life with chronic illness

For so long I let others make me believe I had to wait for my health to improve, to hit certain milestones in my recovery and begin striving after these materialistic achievements to be of value and for my life to have meaning and purpose again. However, chronic illness causing me to have time and space away from the busyness of life and losing myself in work, education and socialising, which for so long caused me so much sadness and hurt, has actually, on reflection, been the biggest blessing.

It’s allowed me to realise that:-

  • The timeline the world tries to convince us to follow is made up,
  • I don’t need a job, income, travel experiences and achievements to be of value and,
  • My worth isn’t found in my ability to achieve those materialistic things.

Contrary to what society and how social media can make us feel, God has put every single one of us on a unique path, with different gifts, experiences and purposes.

 

chronic illness limiting what you can do doesn’t limit your worth

Chronic illness limiting what you can do doesn’t limit your worth:-

  • Working less doesn’t make you less capable.
  • Going to school or uni less doesn’t make you less knowledgable.
  • Socialising less doesn’t make you any less of a friend.

Our value and worth doesn’t change based on our ability to do those things. We are enough exactly as we are and our lives have meaning and purpose everyday, regardless of our circumstances – on our best days, worst days and everything in between.

While yes, unfortunately, there will be people who criticise you, who will make you feel like you’re falling behind and inferior, there will be others who are inspired and encouraged by you right now, by the strength and resilience you show each day and the knowledge you share about your journey. Nothing anyone says or thinks can limit your value and this impact you have on others, especially those on a similar path to you who will be encouraged to not give up hope and comforted knowing they’re not alone.

navigating life with chronic illness

Navigating life with chronic illness: Transforming

I spend my days at home feeling like I’m being left behind while everyone else’s lives transform and progress. I’ve watched from afar as other people my age have:-

  • Got job promotions
  • Got married
  • Had kids
  • Moved out of home 
  • Travelled.

 

As lockdown ends and life returns to normal for everyone else, those feelings are increasing again. However, as I’ve reflected the last couple of days I’ve realised that while yes on the outside my life has stood still the last couple of years, on the inside I’ve transformed and grown as a person more than any other time in my life.

  • I’ve become more compassionate and understanding and have a greater desire to help people, especially the elderly and chronically ill.
  • It’s taught me to prioritise looking after my mental health as much as my physical health.
  • I prioritise catching up with people in person rather than watching their highlight reel on social media.
  • I have deeper and more meaningful conversations with people.
  • I’ve learnt the greatest gift I can give someone has no monetary value and that is my time and care. 
  • I’ve learnt to value and cherish every moment and gained a greater appreciation for the small things in my everyday life that I completely took for granted before.
  • Most importantly, my faith and trust in God has strengthened more than any other period.

 

transforming and progressing has many different forms

Now I realise maybe I haven’t fallen behind and my life hasn’t been on hold. Maybe I’ve been transforming and making just as much progress as everyone else just in a different way. No I haven’t made the same progress in my career, relationships or travel experiences as other people my age, but on the inside I’ve grown as a person and gained a perspective on life and my Christian faith that no job, amount of money or holiday could ever have taught me.

My transformation may look different and I may be at a different stage in my life to others but different doesn’t mean it’s any less valuable or the wrong stage. There isn’t a right way to live life and a timeline to do things by.

navigating life with chronic illness

Navigating life with chronic illness: Navigating everyday life

navigating life with chronic illness: the unknowns after diagnosis

When diagnosed with a chronic illness, my whole world was turned upside down. Everything I knew was taken from me and all I was left with were questions as I begun this new path, navigating life with chronic illness:-

  • Why me?
  • Why now?
  • What’s the purpose of this?
  • Will I ever get better?
  • What if I get worse?
  • How will I be able to live like this for the rest of my life?
  • Will I ever be able to work again?
  • Will I ever have the opportunity to make new friends?
  • Will anyone want to be friends with me?

 

Questions that years on I still don’t have all the answers to. As someone who used to love being in control and have everything planned out in advance, I struggle with the unknown. The uncertainty scares me.

 

navigating life with chronic illness: the unknown future 

Navigating a future always having to manage a chronic illness scares me. However, a future without having to navigate chronic illness scares me too. I know this might sound like a strange thing to say, but for the past couple of years, chronic illness is all I’ve known. It’s taught me lessons, shaped me and completely transformed me as a person to the extent that I feel like I’d be returning to a world I don’t belong in anymore, surrounded by people I struggle to relate to and who struggle to relate to me.

 

I don’t believe I’m going through what I am to simply return to the life I had before. And that brings up even more questions:-

  • What career path will I go down?
  • How will I make new friends?
  • Will I be able to find people I can relate to?

 

I don’t know what my future holds but everyday I pray and trust God that one day I’ll have the answers to these questions and the purpose of this journey will become clear. Chronic illness being so unpredictable and full of so many unknowns has taught me to live in the moment and take things one day at a time, trusting that God knows my future, that His plans for my future are good and he will direct my steps each day.

navigating life with chronic illness

3 things that help me navigating life with chronic illness

To help me navigating life with chronic illness each day, I focus on the following 3 things:-

 

1). If believing you can heal is impossible, believe you can progress.

I’ve read stories of people with chronic conditions heal completely or improve their health enough to be able to return to work, travel and play sport again. I’d like to believe, God willing, that’s possible for me too. However, believing in this recovery when you’re bedbound, housebound or your symptoms are constant and unrelenting can feel impossible. If believing you can heal is impossible, believe you can improve.

  • If you’re bedbound, believe you can sit up, even for a minute. Then, once you’ve achieved this, believe you can sit up for 2 minutes.
  • If you’re housebound, believe you can step out your front door. Once you’ve done that, believe you can walk to the end of your drive and back.
  • If you’re not able to exercise, believe you can run for 30 seconds. Once you’ve achieved that, believe you can run for 1 minute.

Healing doesn’t happen overnight. It’s an accumulation of those small improvements and habits repeated consistently. Over time as these little bits of progress add up, returning to work, being able to travel and do the things I would love to will become more within reach.

 

2). Don’t judge each day by the progress you make but by the seeds you plant – adapted from Robert Louis Stevenson

We can get so caught up in trying to reach big milestones, comparing ourselves to others and dwelling on how far away we are from our overall goal, that we fail to appreciate how far we’ve come, the progress we’ve made until now and the small things we do each day.

We live in a society which judges our efforts by the visible progress we make. It’s what leads us to have unrealistic expectations for the changes we make to improve our health. It causes us to want our efforts to produce instant results the same day. It contributes to our frustration when symptoms flare and progress plateaus. 

However, progress takes time. It takes time for our body to adjust to any change we make. While it’s important to celebrate any progress you make, don’t be discouraged if you feel your progress has plateaued, you’re not improving as quickly as you hoped or symptoms are flaring. Instead, focus on and be proud of the seeds you’ve planted that day:-

  • Resting when needed, 
  • The nourishing meal you cooked, 
  • The 5 minute yoga routine you did, 
  • The journaling practice you completed.

These small changes and habits you make may not produce instant results the same day or receive validation from others but it’s these efforts that add up over time to produce the visible results and progress in the future weeks and months ahead. 

 

3). Do at least one thing each day that makes you feel good both physically & mentally.

When diagnosed with a chronic illness I spent so long saying I would enjoy my life and live in the moment more once I’m healed. The problem with chronic illness is there is no timeline, no end date, no indication when or if my health will improve and allow me to return to doing the things I would love to.

“Sometimes you have to let go of what you thought life would be like and find joy in the story you are currently living”

Adapted from Rachel Marie Martin

So I now choose to find joy in the present moment, regardless of how I’m feeling. I now value and look forward to the small things everyday, which I always took for granted and never appreciated before.

 

There’s so many different things recommended to improve our health and things that we enjoy doing:-

  • Fresh air & sunlight,
  • Walking in nature,
  • Drinking green juices,
  • Breathing exercises,
  • Daily movement,
  • Journaling,
  • Yoga,
  • Cooking nourishing meals.

You need a full time schedule to fit it all in. I’m someone who’s always loved making a long to do list and feeling satisfied as I tick every thing off each day. However, if our time and energy is limited it can be hard to fit them all in or if I manage to do everything I find the stress of fitting them all in counteracts the potential health benefits of each one.

 

navigating life with chronic illness: my physical & mental health toolkit

Now, rather than making a list of multiple things to do everyday, I have a list of all the tools which I find beneficial for my physical health and a list of all the things that benefit my mental health. I make sure I schedule one thing to do each day that makes me feel good physically and one thing to do that makes me feel good mentally.

Physical Health Toolkit Mental Health Toolkit
Green Juice
Grounding
Walking
Yoga
Stretching
Visualisations
Breathing Exercises
Fresh Air
Being in Nature
Baking/Cooking
Listen to Music
Play a Podcast
Breathing Exercises
Read a Book/Bible

That one thing may be different each day depending on my energy levels, time and how my body feels.

If I manage more than one, then great. I find I’m ending the day in such a more positive mindset completing just one thing I set out to rather than attempting to do 4 and only managing 3.

 

chronic illness management blog posts

Click to read my other blog posts with tips and strategies that help me manage my symptoms:-

 

contact me and follow more of my journey on social media

How do you navigate life with chronic illness? How has chronic illness changed your perspective on life, faith and shaped you as a person? I would love to know your experiences. Leave me a comment below or message me on InstagramFacebook, Twitter, Pinterest or Youtube.

 

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12 thoughts on “Navigating Life With Chronic Illness”

  • Hi Lucy,
    This is a really profound post filled with such wisdom. I agree with you – dealing with a chronic illness is definitely a unique journey that grows us in ways that nothing else could have. It can be hard to see others experience milestones and we feel like we’re just left on the shelf, but he definitely has great things lined up for us too! Thank you for sharing this and I will be subscribing!
    Tasha Marie x

    • Hi Tasha, thqnk you so much for your comment, I really appreciate your kind words. It’s so true, it teaches you lessons and shapes you in a way that no other experience can. It’s so hard to not feel like we’re falling behind but us being on a different path to others doesn’t make it inferior or mean our lives still can’t be fulfilling and have meaning. You’re welcome, thank you again for your comment and subscribing, I really appreciate your support 🙂 Take care. Lucy x

  • It really is amazing the insight that we get from life with chronic illness. Sometimes I think I would’ve benefited from these lessons before I got sick, but perhaps I wouldn’t have taken them seriously. Anyways, an excellent post and I’m sure it will resonate with many chronic illness patients out there!

    • Thanks for your comment Carrie. It really does teach you lessons that no other experience in life does. I agree with you, I think some lessons can only be learnt through experiencing things. Thank you so much again, I appreciate your comment 🙂

  • Thanks so much for joining us in the linkup, Lucy! I always love reading a new perspective, take on the writing prompts, and making yet another friend in this close knit community 🙂

    • You’re welcome Sheryl, thanks so much for having me 🙂 I’m so glad to be a part of this community and I look forward to getting to know you better 🙂

  • What beautiful insight you have gotten and shared here. I have found this to be very true; I’ve done a lot of transformation since my falling sick. I’ve grown into a deeper human and have worked on some of the hardest things about myself that I wouldn’t have ever addressed if I was able to continue living as I did prior.

    • Thank you so much Katie, I really appreciate your kind words. It’s so true, this journey can be so hard but it teaches you the most valuable lessons and shapes you as a person in a way no other experience does.

  • This post is so full of ideas that resonated that I don’t know where to begin. The “normal” time line and what people usually do in their 20s struck a nerve. I was also diagnosed early and so the OE didn’t happen, career progression did not happen easily or in the way i would have imagined. But I have managed to achieve a lot with the principle of a little at a time, one step at a time. Love your physical and mental toolkit 🙂

    • Thank you so much Melissa, I really appreciate your comment 🙂 I’m sorry to hear you’ve had a similar journey to mine, it’s so hard when we feel like we’re falling behind that social timeline but like you said we’re still capable and can still be of worth and achieve a lot despite whatever limitations we might have. Taking one day at a time and focussing on small steps and progress is so important. Thank you 🙂

  • Great post. A lot of what you wrote chronic illness or not is relatable to life. Years ago I stepped back and realized the time line I was on was society made. Once that happened I started living my life my way. Setting achievable goals, no comparison and living my best life. Thank you for a reality check to help align my priorities.

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