10 Lessons on living with chronic illness

Today, October 12th is world arthritis day. This month also marks 10 years since I was diagnosed with Rheumatoid Arthritis (RA), a chronic illness resulting in painful swollen joints and extreme fatigue.  Whilst I may never be ‘cured’ of RA, I have over the years learnt to live well with my condition and have experienced huge benefits from the changes I’ve made to my diet and lifestyle. RA is no-longer an ever-present consideration, impacting my daily life, and I’m now in a position where there’s enough distance between my current reality and the dark days of my worst suffering to reflect on what I’ve learnt over the past decade.  Here are 10 lessons I’ve learnt from surviving and more recently thriving with chronic illness….

1. Everything is connected – body, brain, mind. 

In addition to my classic RA symptoms of painful joints and fatigue I suffered with numerous other ‘niggling’ issues.  Patches of eczema, IBS, anxiety, headaches, palpitations, brain fog.  As I undertook my wellness journey all these other symptoms disappeared.  Perhaps the most striking experience for me was the way in which my anxiety disappeared almost immediately.   Within a couple of weeks, it had gone.  Of course, I still experience anxiety at times, but now it is a ‘normal’ response, not the crippling, nonsensical panic-inducing anxiety I used to experience during normal everyday life. 

Other people noticed the difference in me too.  As my Mum said (in a way that only a mother could!) I no longer have “that dead-look” in my eyes.  Friends commented on how well I looked, that I was like a different person.  My son (aged 9 at the time) said “I think your diet has really made a difference Mummy, you used to come downstairs really tired and grumpy and now you don’t”.

2. Life is a marathon, not a sprint. 

Don’t focus so much on the destination, enjoy the journey and celebrate your wins along the way.  I found this applied to me equally during times when I was suffering badly with RA and I had to pace myself and recognise small achievements, and when I first started to feel better.  I was desperate to be ‘cured’, to get off all my medication and ‘back to normal’.  Over time I’ve learned that it is not helpful to be so obsessed with one particular definition of success and in being more relaxed about my progress I’ve continued to see further improvements.  Maybe I’ll get to a stage where I don’t need any medication, maybe I won’t.  Either way, that’s ok, feeling well and being able to do what I want to do is the most important thing and I’ve managed to dramatically reduce my medication too which is an added bonus.

3. Sometimes you have to ‘give in’

When may RA was at its worst, perhaps the most debilitating aspect was the fatigue.  It was completely all consuming.  It was the like hitting a brick wall, I couldn’t ‘push through it’.  There was no option but to give in to sleep.  I would regularly drive to my parents’ house so they could look after my then toddler & baby whilst I went to bed for a couple of hours.  I tried to fight it, but it was always counterproductive.  Even now, I still experience ups and downs in energy, as do we all – recognise it, adjust your plans accordingly and don’t beat yourself up!

4. There isn’t always an answer.

Whenever I had a flare I would wrack my brains trying to understand why….what had I done, what did I need to change to get better?  The truth is sometimes there isn’t an answer, try and accept that, do whatever it is your body needs to recover and then start afresh.  Tomorrow is another day.

5. You need a plan

Organisation is key, both when you’re in the midst of chronic illness and as you try to work your way out of it.  Be realistic about what you can and can’t achieve, pace yourself.  If you know a walk with friends will leave you fatigued, don’t then plan to go out that evening.  If you have a particularly busy day at work or with family commitments, make sure you plan an easier day following on from that to allow some time to recover.

When it comes to making changes to your diet and lifestyle, again planning is key, particularly at the start.  Plan your meals, make sure you have the food in the house that will support your health and get rid of the food that won’t!

6. Coming to terms with chronic illness is a lot like grieving

The five stages of grief are defined as denial, anger, bargaining, depression, acceptance.  In my experience, coming to terms with chronic illness follows a similar pattern.  There is a sense of loss of your former self.  It takes time to work through and it’s not ‘self-indulgent’ to do so.  Be kind to yourself.

My personal experience was one of delayed ‘grieving’.  In the initial months and years after my diagnosis I was so focussed on getting through each day and trying to manage my symptoms whilst looking after a young family, that I didn’t really take time to process my thoughts and feelings.  It was only once my physical symptoms were more under control and the children were older that the ‘grief’ really hit.  Looking back, I can see that I experienced all the stages of grief before coming to terms with my situation.  It was only once I had got to this point that I had the mental and emotional capacity to seek out and put in place the necessary dietary and lifestyle changes that have resulted in me feeling so much better.

7. Treading a different path isn’t easy.

When you’re making changes to your diet and lifestyle it challenges you and the people around you.  Some can perceive your positive changes as a negative reflection on them.  It makes it much harder to socialise.  But it comes to the point where the pain of missing out is far outweighed by the positives of sticking to your guns, your real friends will understand and support you.  That chocolate cake just isn’t worth the pain of a flare or the energy slump the next day!

8. You have to be your own champion

We are all unique and each individual’s experience of chronic illness, what makes them feel better or worse is also unique.  Trust your instincts and don’t be afraid to advocate for yourself, only you can be the expert on you!  By all means take advice and help from others but don’t discount your own lived experience.  What is right for some people may not be right for you.    

9. Everyone is different.

Experiment, do what works for you, share with others but don’t ever assume the same will work for them.

10. Your body is amazing. It wants to be well, listen to it, nourish it.

Further Information

For those of you interested in learning more about arthritis, you’ll find lots of great information on the Versus Arthritis website. NRAS is a great resource for sufferers of Rheumatoid Arthritis and those who support them.

If you’re looking for help and support as you undertake your own wellness journey, I’d love to help! You can find out more about my 1:1 support packages and arrange a free, no-obligation discovery call here.

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