Surprising Lessons Chronic Illness

5 Surprising Lessons My Chronic Illness Taught Me

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There’s no doubt about it – chronic illness is hard. When I turned 30 last year, I reflected on how different my life looked to what I had originally planned. But the surprising thing was that amongst the negatives, there were some positives that came from my illness. Lessons that I may never have learned. These are 5 surprising lessons that my chronic illness taught me.

1. Compassion for Myself & Others

Early on in my chronic illness, I used to push through and ignore what my body was telling me – usually that I needed to rest! I lived in a push-crash-recover cycle for at least a couple of years. This was punishing on my body in so many ways. Then one day a friend of mine saw me pushing through a day full of pain. She asked me whether I would advise her to do the same if she was the one with a chronic illness. I stopped dead in my tracks, because the answer was a resounding NO. I would never advise someone I cared about to push through the pain and fatigue, knowing it would just result in a crash.

So why wasn’t I showing myself the same compassion? Slowly, I started to learn how to be compassionate towards myself and my body.  It started off small – giving myself permission to decline an invitation or taking a break from an activity to rest. Before long, I realised that I was actually able to be my best self when I wasn’t constantly circling the fatigue drain. I was able to be present with friends & family, and actually enjoy their company.

Once I started practising compassion towards myself, I found myself practising it more towards others. After all, if there was an unseen reason for my struggles, then other people might have the same.

2. Healthy Boundaries

I don’t know about you, but I’ve always struggled with saying no. But learning to say no was one of the surprising lessons chronic illness taught me. Saying no is a healthy boundary. It’s a way for you to ring fence your own resources for yourself. Perhaps it’s because you need to rest that day, or you have some important errands to run and you only have enough spoons for the errands (and not coffee with your friend). Sometimes it’s simply because you have a pain-free day and you’d much rather spend it reading!

The first step to healthy boundaries is putting the boundary in place (saying no). However, the most important lesson I’ve learned is the other part – explaining why you’re saying no. This is important when it’s a relationship that you value. It also helps your loved one to understand what’s going on for you.

A quote about bad things leading to good things

3. Being Mindful of My Needs

Over the last few years, I’ve learned to check in with myself. I ask myself what I’m able to do and I wait for an honest response – it’s one of the most valuable lessons that my chronic illness has taught me. It helps me to avoid a crash and most of the time I can stop an oncoming crash in its tracks. 

Being mindful of my needs when I make plans has helped me to be a better friend, simply because I can manage expectations! I will only say ‘yes’ if I’m completely sure I can manage, and a ‘maybe’ if I’m not. It also helps me to not feel so flaky in the plan making department!

4. Adaptability

It took me a while to adapt to new limitations once chronic illness struck. As I got to grips with what felt like an entirely new body, I learned to switch things up (sometimes at last minute). I started to manage my spoons better, which allowed me to have a social life again. Whereas pre-chronic illness I’d happily be out every night, that was just no longer an option. So, I started having friends over. It takes far fewer spoons to have a good friend over for a cup of tea and a film than to go to a café & the cinema.

I see this level of adaptability in so many chronic illness warriors. Most of you do it without even thinking! And most of you do it without realising that adaptability is a sought after trait in almost every walk of life – so you definitely deserve a pat on the back.

5. Resilience

Out of all the surprising lessons that my chronic illness has taught me, learning that I am strong and resilient has been the most important. Living with a chronic illness can feel like a constant uphill battle at times. Some of the symptoms and limitations we experience can barely be comprehended by a lot of healthy people. And yet we still battle on, day-by-day, finding joy and smiles wherever we can. And that is beautiful beyond belief.

5 Lessons My Chronic Illness Taught Me: Final Thoughts

Whilst it’s so important to acknowledge all the hardships that chronic illness can bring, and to raise the voices of people who are suffering – there should always be a little space left to celebrate the good. It took me a long time to begin to see any glimmer of hope, but it’s good to remember that no matter how stormy it gets, the sun is always shining above the clouds. 

Has your chronic illness taught you any surprising lessons? I’d love to hear from you – let me know in the comments below!

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Coping with Chronic Illness: 4 Mindset Shifts

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Mindset matters. And this is especially true when coping with a chronic illness. Subtle shifts in your mindset can dramatically alter your experience. This is because thoughts become words, and words become actions. We end up becoming what we think. 

Am I claiming that you can heal from your chronic illness by thinking positive thoughts? Absolutely not. Chronic illnesses are real, physical and deserving of appropriate diagnosis and treatment.

However, the mind, body & soul are intrinsically connected in ways we cannot even begin to fathom. We can either help or hinder our body on its healing journey with the thoughts we think and the mindsets we cultivate.

1. Cultivate Balance

Balance is key to coping with chronic illness. 

We can be utterly inundated with messages of toxic positivity. These messages repeatedly tell us that in order to have a good life we must only think positive thoughts and have ‘good vibes only’.

The problem is that the human mind is far more complex than that. We have positive and negative thoughts. The human soul carries both positive and negative experiences. The human body experiences both wellness and illness. 

To develop a healthy mind, we need to acknowledge and honour both the good & the bad. One of the most effective ways to do this is by learning to experience the emotion without becoming the emotion.

Experiencing Emotions vs Becoming Emotions

Experiencing an emotion means that you acknowledge the emotion or sensation by naming it. You might say “I am feeling out of control” or “today I have a lot of pain”. You then follow it up with “…and that’s alright”. This small act of compassion for yourself allows you to have this emotion/sensation and to not have to fight it. 

Becoming an emotion occurs when you either don’t acknowledge it (push it down or try to push through) or don’t give yourself permission to feel what you feel (I can’t afford to rest because I have so much to do today). The result of this is that the emotion or sensation becomes trapped rather than passing through.

When you give yourself the space and permission to feel whatever it is that you feel, you can move on with your day without it consuming you. If you’re in a lot of pain today, but that’s alright, you’ll probably change your schedule to accomodate your needs. If you don’t, you’ll probably struggle through (bad) or berate yourself (also bad).

2. Grieve for What's Been Lost

Having a chronic illness can feel as though your very self is lost. I personally experienced my life shrinking dramatically – I lost my independence, I lost my social life, I no longer recognised my body, the hobbies I loved so much were no longer possible & my self worth plummeted. 

I was clinging to who I was pre-Lyme, and holding onto the notion that if only I could get better I would go back to who I was. Little did I know that grieving that loss was integral to my healing. 

Now that I’m on the other side of Lyme and I’m very nearly in remission, I look over my life and I see how different it is to what I imagined. I also see that the old plans I had just don’t fit with my new body & life. Some just no longer make sense, whilst others are just no longer possible as my body has changed due to Lyme. For example, my joints have been damaged, which means that hiking for hours just isn’t an option for me anymore.

I had to grieve all that loss and finally come to a place where I could accept that there had been an unexpected plot twist in the story of my life. Then I had to learn to love the life I have.

When I was very sick, this was hard. Some days the only things I could find to be grateful for were a cup of coffee or a soft pillow. But as I cultivated that acceptance, I was able to find more to be grateful for. Now, I love the community I’ve found and I adore the work I do to raise awareness for Lyme, and the free treatment clinics I run has been a way for me to convert my pain into purpose. And I wouldn’t change it for the world.

Coping with Chronic Illness
3. It's Not All or Nothing

This may apply to some more than others, but if you’re the type of person who’s very goal oriented, it can be difficult to be flexible with yourself. 

It’s time to cut yourself some slack!

I love a clean home. In fact, I’m one of those people that actually enjoys cleaning. For me, a clean home means a place of peace & sanctuary, and I find it hard to relax if I’m surrounded by clutter. Typically, I’d want to get everything nice and tidy before I sit down to relax. Lyme had other plans! 

I quickly had to learn to prioritise my to-do list and give myself a pass if I left the washing up until the next day, because tidying up the living room was going to have to bigger impact on my mental well-being that day. I realised that sometimes, it’s OK to be in a grey area for a while.

Another very important area is with treatment protocols. There are going to be days that you don’t eat the perfect diet, or follow the perfect detox regime, or have the perfect sleep. In those times, it can feel overwhelming and as if you’re on a slippery slope downwards. When you feel like that, it’s important to stop. Give yourself permission to be imperfect, and do what you can. Forgive yourself if you didn’t do quite as well as you’d hoped.

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4. Cultivate an Attitude of Gratitude

Before I started a gratitude practice, I used to wonder how it could help. How could it help finding one thing to be grateful for in the midst of everything else going wrong? How could thoughts of gratitude help me in coping with a chronic illness? Grudgingly I began to give it a go. It started off with just saying to myself that I was grateful for my coffee, or a nice meal.

After a while, magic began to happen. It was eye opening just how profound the effect was on my mind, body & soul. The only way I can describe it is like having the blinkers removed. Before, I could only see what was in front of me – pain, fatigue, all the limitations. When I began to widen my field of view and acknowledge the other things in my life that were good it didn’t mean that the struggles disappeared but they were framed in a more balanced way.

The usual advice is to start off by writing in a journal each day. If you think this will help you then go for it! That didn’t appeal to me, so I just made a point every time I felt overwhelmed to note one thing that I was grateful for whilst taking a deep breath.

Mindset & Coping with Chronic Illness: Final Thoughts

Mindset matters, but don’t fall into the trap of believing that you should only be thinking positive thoughts. Give space to both the positive and negative, cut yourself some slack and find some little things to be grateful for each day. You may be surprised.

Have you implemented any of these mindset changes? I’d love to hear from you – let me know in the comments below!

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Dating FI (2) (3)

Dating with a Chronic Illness: 5 Steps to Get Started

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If, like me, you have a chronic illness and would like to start dating it can feel like an incredibly daunting task. But you’re in luck, because I’ve been dating now for a year and I’ve learnt some important lessons along way. And of course, I’m here to pass on the knowledge about dating with a chronic illness!

Is Dating Right For You?

Before we kick off with my 5 step process, I want to take a moment to acknowledge that many people don’t want to date, and that’s okay. One mindset I struggled with for a long time was that I should have a relationship, I should be dating, I should be living a ‘normal’ life. So first of all, I want you to chuck the word should straight in the bin. Should does nothing but bring shame and judgement. 

dating with a chronic illness

For a long time I was just too sick to make space in my life for dating. And then when I started to recover my physical health, I had no interest in dating for a while. But about a year ago, I decided that I’d like to dip my toe in the water and see how it went. 

So without further ado, here are my 5 steps for dating with a chronic illness.

Step 1. You are not your chronic illness.

In the depths of my illness, it was hard for me to see anything else. Lyme, Lupus, ME & Fibro filled me up all the way to the edges. I suffered depression & anxiety, and my self esteem plummeted to absolute rock bottom. None of this was helped by the fact that my body had changed and I didn’t recognise her anymore. 

If I could go back and tell myself one thing, it would be to remind myself that I am valuable, loved and lovable. I would say that there is hope and no dark night lasts forever.

I can’t go back though, so I’m saying it to you.

The most important awakening I needed to have before I started dating was that I am way more than my chronic illness. I had to start finding myself again. I even asked my sister and closest friends to tell me what they loved about me. They all immediately shot back text messages telling me what they loved about me. Funny, caring, intelligent, fiery, reliable. 

Start your journey into dating with a chronic illness by reminding yourself of who you are. You are a complete person who happens to have a chronic illness. And you know what? Anyone would be lucky to have you 😉.

Step 2. Be Upfront.

Don’t hide it, but don’t make it your identity. 

Lots of people wonder whether they should introduce themselves as “Hi, I’m Sarah and by the way I have a chronic illness”. I wondered this, too. But I realised that that came from a place of believing that my chronic illness made me defunct and as if I would be burdening a potential partner. I had to revisit step 1!

I generally bring up my chronic illness after some messages have been exchanged and (this is the important bit) I have decided that this is a person I would like to meet.

It’s not about trying to find someone who will tolerate a chronic illness, it’s first and foremost about finding someone who lights your fire. You deserve that just as much as the next person. And by the way, in the year I’ve been dating, I have only met one person who had an issue with my chronic illness. One.

I usually mention that I enjoy blogging, and that one of my passions is raising awareness about Lyme Disease. That allows me to communicate that I have a chronic illness in a way that feels empowering to me.

Remember: you teach people how to treat you. If you present yourself as being all about your chronic illness, then how will they get to know the beautiful human being that you truly are? On the flip-side, if you were talking to someone who constantly went on about the same topic you’d probably get bored. Be your whole, true self! 

Step 3. Maintain Boundaries.

Maintaining your own boundaries when dating with a chronic illness is crucial to having a safe, fun experience. Boundaries might include:

💚Avoiding late night dates if it interferes with your sleep schedule.

💚Taking time to ensure you’re looking after your mind, body & soul.

💚Not going into spoon debt.

💚Avoiding activities that are beyond your physical capabilities. Rock climbing sounds like loads of fun, but your joints might not be happy!

💚Never letting anyone make you feel ‘less than’ for having a chronic illness. The right person for you will be flexible and will not make you feel guilty or pressured to do things you don’t want to or are unable to.

Remember: you’re entitled to any boundary that you feel is necessary and you’re not asking too much when you expect others to respect them.

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Step 4. Get Out of Your Comfort Zone

Whereas step 3 is about ensuring that your potential partner is able to be flexible with you and your boundaries, step 4 is about how you might be able to be flexible with theirs.

Over the last year, I’ve discovered so many things about myself through dating. I’ve been to places I never would have visited, I’ve eaten foods I never knew existed, seen sights I never would have seen. 

Opening myself up to new experiences and new people has enriched me on the deepest level. It’s been the greatest teacher, showing me that everyone has ‘stuff’, and just because my ‘stuff’ is a chronic illness, it doesn’t make me any less worthy.

Have I had some less than amazing experiences too? Yes! There are so many fish in the ocean, but there is also lots of trash. But I learnt something about what I don’t want.

 

Step 5. Have fun!

Dating with a chronic illness is not an exercise in finding someone who will tolerate your health picture.

Read that again.

Dating with a chronic illness can be fun, enriching, exciting and eye-opening! You deserve those experiences just as much as the next person. 

When I realised that it was my mindset holding me back, and not my chronic illness, I was able to finally relax and open myself up. And a relaxed, open person is always an attractive person. 

Dating with a Chronic Illness: Final Thoughts

The number one lesson I’ve learnt from the last year is that the only blocker was myself. The overwhelming majority of people are just not that concerned about me having a chronic illness. Most people are more concerned about their own ‘stuff’ and how other people will react to them. So, if you want to start dating, and decide to try, I’d love to hear from you! Let me know in the comments below.

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Goal Setting with a Chronic Illness

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It’s that time of year again. Regardless of whether you’re a New Years Resolution setter or not, I thought it’d be a great opportunity to talk about goal setting with Lyme.

An enormous part of living with a long-term illness is the acceptance of your current situation. And by acceptance, I don’t mean knowledge. There’s a huge difference between knowing your physical limitations and accepting your physical limitations. Not many of us need reminding of the current state our bodies are in. Some days can seem like one long reminder of everything we can’t do. We resent this illness, these circumstances, our bodies and ourselves. We often end up pushing on and punishing our bodies because anything else might mean that we become okay with how things are.

That’s how I felt for a long time. It was fear. Fear that if I didn’t rail against it that it would overtake and consume me. Fear that it was my lot in life. I would either push myself too hard and cause myself to crash, or I’d begrudgingly rest whilst reminding myself of all the things I should be able to do.

Before I got ill, I was an avid gym goer – I was particularly into weight lifting. I wasn’t going to win any awards, per se, but I truly loved it. I loved pushing my boundaries and breaking my records. I was also a bit of a social butterfly, who’d generally be the first to take up an invitation. I used to take myself off to completely new places where I didn’t know a soul and dive in. Lyme has definitely put a crimp in all of that.

Lyme can often leave us feeling isolated and powerless to change our lives for the better.

The amazing thing with goal setting, though, is that it really is a wonderful tool for getting motivated to achieve your dreams. The problem with it, is that sometimes the so-called first steps feel like marathons to someone with a chronic illness. You can’t just go to the gym, or simply join a club. So, how exactly can we set achievable goals if the end result is so out of reach? There are two parts to it, and neither one will work without the other. The first is very practical.

Part One

Identify the end result: Using my exercise example, I want to be able to hike, go to the gym and experience the benefits of a strong body. 

Identify the smaller steps: For a relatively healthy person, the first step would be to simply do some exercise.

Identify your own blockers: simply renewing my gym membership and going to the gym isn’t really possible for me, as a standard workout would cause me to crash at this point in time. Additionally, I am still in the recovery period from lyme-related surgery on my foot. And finally, and most importantly, my joints and muscles just aren’t able to cope with a full workout.

Identify steps to work within your limitations: I realised that I rarely ate three meals day. This probably wasn’t doing my blood sugar and insulin sensitivity any favours, and therefore my energy levels. Next, I realised that as any high intensity workout is out of the question for me, I needed to identify some sort of movement which I could handle. Even typical yoga is often too strenuous. But I’m able to walk for 20 minutes, or do some very gentle yin yoga – which is mostly stretching whilst laying down. Additionally, 5 times a week is way too much for me at the moment. Once or twice a week is a good aim.

So you see, I’ve taken the typical healthy person starting point (simply start going to the gym) and broken it down to fit my own abilities. Now I have two goals – eat three times a day & do some gentle movement twice a week. I can still benefit from the positive psychological rewards of goal setting without setting myself up for failure. Here’s some more examples of breaking typical starting points down into manageable chunks:

Lose Weight
This is a very common goal! Most of the advice out there is usually aimed at starting a healthy eating plan and getting some exercise. With Lyme, you may not be able to cook from scratch every day. But have you considered making some swaps, like switching from juice/soda to water, and choosing foods which are less processed? As far as exercise is concerned, you could try to do some stretching a couple of times a week instead of a full on gym routine.
Learn a New Skill
The typical advice for this is simply to practice every day. However, brain fog and physical limitations (like arthritis) come into play for those with Lyme. Try choosing a skill that's realistic, yet still fulfilling. In other words, don't decide on running a marathon or becoming a guitar hero in 3 months! Instead, perhaps you could decide to walk a certain number of steps every day, or practice guitar 3 times a week.
Find a New Job
Sometimes, it isn't possible for those with Lyme to work at all. Perhaps you could look at volunteering for a few hours a week. For those in a less than fulfilling job, you often have certain advantages like flexible working which you can't guarantee in a new job. Try to find fulfilment in even the smallest aspects of your role, and focus on the fact that things WILL change.
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Part TWO

So, we’ve covered off the practical side. It’s time to look at the other side of the coin. No amount of list writing or goal setting is going to help if you can’t mentally get yourself to where you are right now. It’s no good just knowing where you are, you have to accept it. It took me a long time to be OK with my goals being ‘eat three times a day’ and ‘stretch once a week’. Whilst in my healthy state, they were givens. They didn’t take any effort or planning. I resented that something so simple had become a challenge for me, until I accepted it.

How did I learn acceptance?

As human beings, we all have a tendency to want to avoid that which makes us uncomfortable. It’s not got anything to do with having a chronic illness – we all do it. The problem is, we put so much energy into trying to prevent experiencing something that we often put ourselves through worse! For example, take the person who stays in an unhealthy relationship for fear of being alone. They often find that being alone really isn’t all that bad and is a darn sight better than the unhealthy relationship!

It’s the same with accepting our physical limitations. The fear of doing so is much worse than actually doing it. In fact, doing so is incredibly freeing! When you allow yourself to have these limitations, not only do you invite self-compassion, but you allow yourself to enjoy the small things again. Instead of being angry and resentful because you were only able to play piano or write for 10 minutes, you can start to be happy for those 10 minutes. And it’s those small achievements that turn into your small goals.

Living with a chronic illness forces us to stop seeing things in extremes. I never dreamed I would be able to accept some gentle stretching as the most exercise I can do, but through acceptance I’m able to enjoy and celebrate that gentle stretching, rather than resenting my limitations.

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Do you set goals? I’d love to hear from you. Let me know in the comments below!