I occasionally write about living with Coeliac Disease, SIBO, colitis, and related chronic conditions. I’m reminded that others also struggle, and that that I can support them sharing my challenges, and the resulting highs and lows.
So, this post is a little more personal, with details that go above and beyond what I might normally share. Warning: there will be talk about irregular bowel movements, bloating, discomfort and pain!
Living with chronic illness hasn’t stopped me believing that life can be awesome.
Obviously, it comes with ups and downs, good days and bad days.
Millions live with a myriad of chronic, silent illnesses. I read that 54% of people in the US live with chronic disease. In fact, someone you know probably has one or more of these. You might even be oblivious to their pain and challenge.
Perhaps they don’t look sick. They most certainly don’t act sick. In fact, many are thriving despite their challenges.
Learning to change
In 2020, there’s a lot of talk about the “new normal”. There are a lot of articles at the moment about “long-COVID”, which many of those with chronic illness may know as post-viral fatigue. Anyone that has lived with the aftermath of the Epstein-Barr Virus or Fibromyalgia may have decades of experience with post-COVID symptoms.
Perhaps COVID is a good thing for those with chronic illness: it brings to the forefront what many have suffered in silence. Chronic fatigue might be caused by pain (such as rheumatoid arthritis or Fibromyalgia), the drugs and medication you are taking (such as cancer treatment) or just from the sickness itself.
Irrespective of what the trigger to the chronic condition is, we resist change. To some degree, we even apply the five stages of grief through to acceptance.
I can’t talk about chronic illness without mentioning difficult topics:
- grief and the process of letting go, especially letting go of the dreams and hopes you had for a life that no longer is,
- compassion & mercy – for yourself and your body,
- learning to listen to your body, including your need for sleep and extra rest,
- listening to your gut and your immune system, and
- learning to notice your energy levels, so that you can begin to play with curiosity.
At the same time, it’s impossible to move forward without a support network and asking for help. Even for the most independent of us, everything changes with illness. Oftentimes, this means that the helper must learn to ask for help.
The lessons of change are difficult. With chronic illness, you learn to adapt, only after you resist! Because you resist, the problems you fail to face persist.
While you resist, you can’t thrive. Thriving requires mindset work, emotional healing and acceptance of change. For healing to take place, patience and resilience are required. Most importantly, no matter what the illness, you have to let go of the expectation that everything will return to how it was before. There will be no returning to what was.
You will change and grow on the journey.
Taking responsibility for yourself & your well-being
The hardest lesson of chronic illness is taking control and full responsibility for your health and well-being, especially when you’ve been told: “this part of you is broken”. Just because you trust your doctors and medical advice, doesn’t relieve you of any responsibility.
How do you trust yourself when you don’t trust your body?
With chronic illness, so much of life feels out of control. Typically, you wake up not knowing whether today will be a good day or bad day. Others around you might feel like they are also walking on those eggshells!
It’s hard to focus attention and energy exclusively on what we can control, improve on, or what we can work on.
As hard as it is, the little energy that you have must be focused on aspects you have control over.
Get over your shame of chronic illness
It doesn’t matter whether you have Fibromyalgia, rheumatoid arthritis, high blood pressure, or even diabetes – you live with a certain shame.
In the Coeliac Disease support group, we joke:
Never trust a fart!
But the reality is much worse than simply looking for a toilet if you feel the need to fart.
There are nights you lay awake, too scared to fall asleep, in case it happens in your sleep. You learn to sleep alone, just in case.
“Just take an Imodium.”
Imodium doesn’t cure the shame.
For most with chronic illness, there’s a shame of never knowing when the condition is going to flare up. And so, many people are living locked up in their homes from IBS, Crohn’s disease, diverticulitis and other conditions that you don’t even know exist.
Someone with chronic illness may stop telling you about the highs or the lows. They feel like a broken record. They don’t talk about the inconvenience their stress and anxiety cause them. Sometimes they hide chronic fatigue, tiredness or even pain. There’s no point in being Debbie Downer – complaining and talking about how bad they feel.
You won’t hear about the waves they are riding, especially if they are struggling to keep their head above water!
My shame wouldn’t allow me to talk to you about the chronic bloating, irritable bowel syndrome and chronic diarrhoea.
Some weeks were all bad days.
Today, I am grateful that I get to count the bad days in a month, rather than the bad days in a week.
Living with guilt:
The shame layers over the guilt: this is all my fault.
Obviously, Coeliac Disease has a genetic factor of predisposition. It has a physiological factor of the food poisoning that triggered my immune system and set it off permanently.
But before that, there were lifestyle choices I made that I blamed myself for:
- A work hard – play hard lifestyle, where I burned both ends of the candles;
- Surviving by drinking 6-10 coffees daily;
- Skipping meals and replacing them with energy drinks and junk food;
- Avoiding responsibility for my financial well-being, leading to feelings of insecurity; and
- Ignoring the first signs from my gut that things weren’t okay, long before the food poisoning.
Remember compassion & mercy.
When you first get sick, doctors never speak about the healing process. They certainly don’t mention anything about the emotional trauma and healing that has to happen. Most fail to acknowledge the psychological factors that will be involved in “managing” your condition.
After you’ve made it through the process of grief, through to acceptance, you will be a stronger person emotionally, even if you aren’t physically. Don’t discount, however, that it’s also possible to make the lifestyle changes your condition requires, and do better physically than you were before.
It starts with an acceptance that things will never go back to how they were.
Can you accept the present moment with compassion and mercy for yourself and your body?
Look at yourself through eyes of love and compassion: rather than blame and guilt.
Guilt is a road trip to nowhere.
Compassion and mercy will allow you to build a new lifestyle that supports you as you are today. Accept your feelings of sadness, anger, resentment and even rebellion.
When there is pain – whether it’s physical or emotional – envelope it with compassion.
When I decided I sick and tired of being sick and tired, and I was ready to return to healing and wholeness, one of my first stops on the road was this Stephen Levine video. (Skip ahead to minute 15 if you don’t have time to watch it all).
Consider the words you speak and think when you are in pain or angry. Especially when you are speaking to yourself or your body: when I was sitting on the toilet in dire straits, believe me, I was cursing my bowels. Not blessing them! It never occurred to me to bless and feel mercy and compassion and love for my body, doing the best that it could in the circumstances.
But give yourself all of the support – emotional and mental – through the pain and uncertainty.
Living with illness uncertainty
Unfortunately, the stress of uncertainty (never knowing which days will be good or bad), takes an additional toll on your health and well-being. We are creatures of habit. And we ascribe meaning to everything, including our routines.
Unfortunately, those living with chronic conditions often lose the ability to predict their routine and schedules.
Chronic illness causes perpetual change and uncertainty – so much so that psychologist now have the phrase “illness uncertainty“. This is the state of uncertainty that is caused because we are no longer able to determine and ascribe meaning to illness-related events.
For example, you feel sick, and you are not sure whether you have a new symptom related to your existing condition or whether you need to go to the doctor because you are actually sick with something else. With chronic illness, you may lose your sense of knowing: this is normal, and this is not normal. This is illness uncertainty.
Worse yet, there are the days when you really start to feel better and think that the changes you’ve been making in your lifestyle are helping. Then you find yourself once again flat on your back—all that effort in making changes, for nothing.
How do you create any type of certainty when it’s impossible to predict the outcome? I’m writing more about How to Overcome the Impact of Illness Uncertainty.
One effective step is to lean into compassion and mercy for ourselves and our bodies. Choose to love yourself just the way you are today, whatever it may hold.
Learning to listen
Loving yourself, with compassion and mercy, means listening to your body.
The only person that feels and intuits what you need more or less of is you. Everything else is simply good advice and guidelines.
For example, if you think of exercise and movement, you know that these are essential for good health and well-being. Nonetheless, overdo the exercise, and you can set yourself back a few weeks.
In a similar fashion, in my drive to go gluten-free, the nutritionist pushed me towards corn products. They do NOT go well with my gut and SIBO. So, while the advice I received was to consume processed foods from corn, I avoid it like the plague and my body thanks me.
Listen to the pain
Recognise that pain and illness come in waves. Some days it takes effort just to stay present and mindful.
How I wish there was a pill I could take for a quick fix!
Yes, there are pills and medication for pain. There is the medication for inflammation. But: what causes the pain and inflammation in my body? Many of the answers that I was looking for lay within the pain and inflammation.
Have you asked your pain what secrets it holds for you?
While pain is a problem and can cause further problems, most of the time, it is merely an indicator that something is wrong. It’s like the red light on the car dashboard: the problem is not the red light.
Pain, obviously, if left unchecked, causes a myriad of other problems. Pain induces stress, and your body may produce extra cortisol. You might suffer from anxiety and depression, caused in part by sleeping badly. If you are tired, because you aren’t sleeping properly, this may result in additional depression and anxiety.
But we go to the doctor, or we go to the pharmacy and medicate the pain.
The million-dollar question, meanwhile, goes unanswered:
What is the underlying issue that you have failed to address?
Pain is but one problem. It may or may not be your primary symptom. You could be tired from viral fatigue or because your body fails to absorb nutrients, vitamins and minerals from your food.
Learning to listen to your body, even in pain, is vital.
It allows you to learn the difference, even when you feel overwhelmed and want to give up.
Ashamed to ask for more?
Whatever you do, don’t allow shame, politeness or deference stop you from talking to your doctors about everything that is going on. Keep a journal and talk to your doctor about symptoms, pain and what you’ve noticed. There might be insights for them.
One of the best things I did was getting the right medical support. Unfortunately, it took me about a decade to get the right support.
Oh, I wish I knew in 2002 what I know now.
I would have demanded more of my doctors. I would have told them more. I would have asked them to investigate more about my particular problem, rather than walking away, feeling I wasn’t listened to.
Ask more questions!
I was brought up to believe that the doctors know best. Google research does not count towards your medical treatment.
I regret not asking my gastroenterologist about Coeliac Disease when I first read about (yes – search engines and Google): I might have been diagnosed 8 years earlier!
Over time, I became an expert in my body and my symptoms: but I failed to take this back to the doctors.
If you are not getting better, pay close attention to your body and all the data and information it is giving you, then ask more questions.
Don’t expect your doctors to know everything. Every doctor that I’ve ever talked to is a specialist. And typically being a specialist means that they have a profound knowledge of a tiny subject. So unless they are absolutely poured into your one and only chronic illness, they’re not going to be able to help you on the first visit.
Demand more answers and research from the doctor or find a doctor that takes a personal interest in your well-being.
My first doctor was a specialist in the colon and liver. He misdiagnosed me, focusing on my colon (colitis) and irritable bowel syndrome, rather than recognising that the reason that the colon had inflammation was that food was passing through without digesting from the small intestine, which was chronically inflamed. He missed it entirely because his specialisation was the large intestine and liver, not the small intestine.
After several visits, all resulting in “take these pills for life” I didn’t go back any more. I felt he wasn’t listening to what was happening. His response was to give me more pills. The pills were intended to care of the diarrhoea, they didn’t take care of the cause of the problem.
I didn’t know what questions to ask. And I most certainly failed to give my doctor enough support and information for him to support me.
Use your knowledge to get better medical support.
I said before that you are responsible for your well-being. I mean it.
I can now thrive despite chronic illness because the expert in my body and my illness is me.
If you want to rediscover health and well-being, find the doctor that actually helps. This might include false starts.
Fortunately for me, in addition to a great gastroenterologist, I found wonderful practitioners and doctors in alternative and functional medicine. Perhaps more so than in Western medicine, those in functional medicine were willing to keep going back to the drawing boards and investigating until they got to the bottom of all my health challenges.
I finally reached the end of my rope when I realised that Coeliac Disease was not the only problem. I wasn’t as sick as I had been. But despite being gluten-free for years, my symptoms of gas and bloating continued. I was not healing and getting better.
I continued to live with uncertainty.
I had read about SIBO (small intestine bacterial overgrowth) and went back to my doctors to ask if it was possible to have both Coeliac and SIBO. While they were not convinced that was the problem, and thought I was still consuming gluten, they agreed to allow me to try treating the SIBO.
If you can’t have an honest conversation with your doctor, who can you speak with about chronic illness?
Voila! Problems solved.
Sometimes you have to change your lifestyle.
I have one admission to make in all of this: one of the treatments that worked in my healing was one that I knew of at least two years before I actually tried it.
It wasn’t until I really got sick of my shit and being sick and tired, that I finally decided that I was going to do everything that I knew within my power to heal. I made a commitment to making changes in my lifestyle as well as taking treatments long-term.
My new normal is a diet that takes into account both the Coeliac Disease and my microbiome, including the propensity of my small intestine to invite the wrong kind of inhabitants.
To heal, I had to be willing to stand up for myself and ask for alternative treatments! This required a radical change (again) in diet and habits.
Have a great support network
If you want to thrive despite chronic illness, you need a great support network. Your friends and family only know, unfortunately, what you choose to share with them. With a silent chronic illness, they see what you show them.
If you’re pain-ing and you push through it, soldiering on, they stay unaware of how bad it is.
I hid my pain and chronic fatigue behind anger and irritability. I preferred people think I was a bitch, rather than letting them know I was having a bad day. Behind my short temper was a bad night’s sleep, bloating and brain fog which didn’t allow me to think straight.
Your support network can only support you when you open up and share. There’s a level of vulnerability required to get great support. Maybe start by sharing with them 100 Ways to Show Up for People with a Chronic Illness. At the very least, it may be a conversation starter!
I know how hard it is to talk about the symptoms, especially when you feel like a broken record. You don’t want to sound like you’re complaining.
And yet, every day is different. The support you require today may be different from the support you needed yesterday. Those needs range from:
- child care;
- accompany you to a doctor’s appointment;
- alone time;
- sounding boards in making decisions;
- accountability partners;
- run interference;
- pick up groceries or run errands;
- emotional support – just be there; or
- drop off your favourite meal.
As someone who has lived with chronic illness since 2002, here are my two-cents worth:
Be willing to share with them the trials and challenges, letting them know the ways that you need support in both the short and long term.
Change is inevitable: acceptance.
Your friends and family may not understand the “new normal” you live with. Like you, they will struggle to accept change.
The same way you are struggling to accept that things will never go back to how they were, they also struggle. Like you, they want to believe that this is temporary and you’ll get better soon. If that’s not happening, allow for their denial, anger, grief and the process they have to go through to reach acceptance.
Wholeness: all of you and your life
One of the hardest changes for me was accepting that work-life balance no longer existed. There is only life, and until I began to look at all aspects of my life as part of the whole, healing and thriving were never going to happen.
If I want to thrive, I need to learn to thrive even when chronically fatigued. Wholeness requires that I learn my limits of all my energy and availability: for work, my child, and my life in general.
Any time you overdo it in one area of your life (such as work), you set yourself back in every other area! At the same time, any improvement you make in your lifestyle will influence your health overall.
For me, healing had to take place physically, mentally, emotionally and spiritually. There is not only a mind-gut connection but a mind-body connection. See, for example:
I found myself wanting a quick-fix. But the reality of healing was that it had to happen on so many different levels, not just the physical.
Until I was ready to give up the life I had, with all the bad habits that created dis-ease, I couldn’t create a healthy lifestyle.
I wanted a miracle cure: but sometimes the cure is found in change.
Wholeness means that I dive into:
- spirituality – where am I getting spiritual support? I started in December 2018 a Power of Eight group, where we meet weekly to set and hold intentions for others. I’ve learnt so much about the power of small groups and shared intentions through this practice.
- Gut health and the microbiome – does my food and habits support healthy digestion? Am I getting the right vitamins, minerals and nutrients for where I am at in my healing journey?
- Sleep – am I prioritising deep, restful sleep?
- Mindset – what do I believe about myself, my life, and even the outcomes that I can achieve when I am willing to change?
Some people get an overnight miracle. My miracle of healing has been a myriad of small, imperceptible steps and changes that have taken me from chronically ill to mildly ill. Where I am today compared to three years ago is radically better.
Along the way, you learn to celebrate the small victories.
- Do I still have bad days? Yes, occasionally.
- If I get cross-contamination and gluten, do I have two bad weeks? Absolutely.
- If I take the wrong probiotics, do I end up with bloating and gas? Hell yes.
But as I listen to my body, I’ve learned to thrive despite chronic illness. It’s taken a lot of set backs to learn to accept change and to ask for the right kind of support. But in the midst of the uncertainty, I am learning to hold my head up and no longer be ashamed of my body so that I can start to live fully once more.
I hope you to get the compassion, mercy and support that you deserve and need in your journey.
Ditch the Diet & Face the Feelings – Online
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