I read an interesting blog article recently. It was written by a woman who felt completely overwhelmed by her illness, especially the chronic pain she was experiencing. Her doctor suggested that she may benefit from a referral to a Pain Rehabilitation Program that included physio therapy, occupational therapy and psychological support, but after years of not having her illness properly validated, her symptoms minimized and often being told, "It's all in your head," the psychological aspect of this course didn't sit too well with her, yet she reluctantly agreed and after the course had finished, she realized it had actually helped her enormously.
Living with a long-term illness is not for sissies! Perhaps you’ve been in a situation where you’ve had to listen to well-meaning friends constantly telling you that if you only tried this or that, you would surely feel so much better. Hearing this can be extremely irritating, especially if you've spent years trying pretty much everything under the sun with minimal benefits AND spent a decent sum of money as a result.
Even the medical profession sometimes makes you feel as if, somehow, it’s all in your head; "if you were only a little bit less anxious, all would be good." All this can be very frustrating especially for those who’ve spent years trying to convince doctors something's wrong. Perhaps it fell on deaf ears. Perhaps your health problems were minimized. So now you have to live with feeling pretty peeved off as well, let alone feeling stupid, ashamed and humiliated.
So you finally get a diagnosis and you think everything will get better; at last you’ll get the care that you need. Things will go back to normal. You'll get your life back. Not always so. Turns out, you now have to learn to live with ‘limitations’ on so many different levels. Life is not going to be what you expected it to be and that is indeed very disappointing and even depressing.
Some of you may still be working and as the sick leave builds up, so does pressures from the boss. Perhaps you feel stressed and uncomfortable going to work every day.
Your friends may have stopped calling because, after cancelling plans on numerous occasions, they start to assume that you’re not interested in hanging out anymore no matter how much you explain. And here comes the isolation.
Living with anxiety when facing daily health struggles can be very debilitating and depressing, especially if you end up isolated from friends, are unable to meet work commitments or don't have a very good support network.
Then there's the loss of that future story you had about your life. All those expectations of how you thought your life would turn out. So now, on top of everything else, you're grieving, yet no one has died.
People don't often associate chronic illness with grief but the realization that life will never be what it was, and the future is not what you thought it would be, is a major loss. Any dreams you may have had and any plans you might have made have fallen on the wayside. No one has died, yet that's grief, right there!
You start to feel like a damn circus performer doing some complex balancing act that always goes wrong; you keep falling to the ground and there's no safety net. So you start to feel like a failure.
Then you're left with having to face future uncertainties, deal with pain that never seems to get better, or perhaps not getting the care that you need and that's pretty stressful.
You may feel like you've lost all meaning or purpose in life. You may have chronic pain that you find hard to manage, a relentless fatigue and brain fog. You may feel very angry about your lot in life. Indeed, people with chronic illness often have a lot to be angry about!
You may constantly come up against people who show little understanding of your problems or you may turn the anger inwards, blaming yourself for your difficulties. Anger can be a helpful motivator, yet, it can also make pain seem worse and can affect you in so many other ways.
Then, after all that, your doctor thinks it might be a good idea for you to see a psychologist. Well, perhaps after years of being treated as if it was 'all in your head', that suggestion may be a difficult pill to swallow. It may even feel downright offensive.
You may have had to justify your physical symptoms for so long that you automatically go on the defensive. I know. I live with Ehlers Danlos syndrome, a rare and still poorly understood connective tissue disorder, and trust me, I’ve been there. But I’m also a health psychologist so hear me out.
Let me first clarify that most people living with a long-term illness, at one time or another, get anxious, frustrated, angry or depressed as a result of the illness. You wouldn't be human if that didn't happen to you. In my own life, anger has been my main problem. Anger and frustrations at the medical establishment for their lack of understanding and validation. Yep, they have pissed me off majorly over the years and I've had to find patience from every corner of the universe, using every single coping strategy known to man!
Like I said earlier, living with a chronic illness is not for sissies. However, even the strongest and most resilient of people on this planet wouldn't be human if their illness didn’t get them down now and then. It's a constant balancing act which often leads to a sense of failure no matter how hard you try. Living with pain for example, can be utterly exhausting and completely defeating.
But there are ways of tweaking coping strategies that can make life more bearable, meaningful and even fun. Indeed, it takes good self-management skills and a supportive environment to live well with a long-term illness. We are not born with those abilities and neither do many of us come with a ready-made support network.
But when we are able to accept or reduce feelings of distress whether it's anger, anxiety, depression or all three, when we can apply different and better serving coping strategies, when we can make pain seem more tolerable, when we can find meaning and purpose in our lives despite obstacles and broken dreams, our quality of life improves.
Of course, having good medical care is also important; being on the right medication, having an understanding and kind physician, meeting the needs of our physical body with exercise, stretching, a good diet and getting the supportive environment that we deserve. It's a game of multitask!
People living with a long-term illness stare vulnerability in the face on a daily basis and that takes a lot of courage. Indeed, people with a chronic illness are extremely courageous in my opinion, no matter how well you have adjusted to your illness.
With some long-term dedication and support, you can get to a point where you can better weather the storms of difficult days and actually enjoy the good days when they are not dominated by worries, frustrations, stress and anger. It is possible!
Victor Frankl wrote: "When we are no longer able to change a situation, we are challenged to change ourselves." In chronic illness, we simply have no choice but to adhere to this advice. Over time, as our symptoms and situations change, so must we by constantly re-establishing acceptance and control, change or tweak our coping strategies and find a new sense of meaning and purpose in our lives.
And what if we have days when we know what to do to make things more bearable but we just cannot be bothered? Oh yes, that happens too. (Let's face it, constantly having to manage an illness gets old after a while.) Personally, I just go and lie down. Have some time off from making efforts that sometimes feel like they’re hardly worth it. That's okay. It’s a constant balancing act. It gets damn tedious but with the right support, we can get back up, keep going and try again.
I’m hoping to cover these aspects and many more in my upcoming blogs. I want to use this blog to talk about common issues people experience when living with a long-term illness. Hopefully, give people a few ideas about how to improve their quality of life. I'm hoping it will be a validating experience; to show you that you are not alone and it's not 'all in your head'. Indeed, just being able to tell our stories, feeling heard or having our experiences validated can be the first step towards healing.
Also, please know that if you are not coping as well as you would like at the moment, you are nevertheless doing well on some level by the shear fact that you are still plodding along and probably doing your best, however exhausted and fed up. And you took the time to read this blog! Thank you.
So with that, I hope that next time someone tells you that seeing a psychologist might be a good idea for you, you can take a deep breath and know that it's not 'all in the head' but what you're living with really does need psychological support. We are not just physical beings but psychological, social and spiritual beings too. As humans, that is who we are.
If this is something you’ve been affected by, please leave a comment below. If there’s something important you’d like to add, please do so. I'd love to hear from you.
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Dr. Ingela Thuné-Boyle is a licensed Practitioner Health Psychologist specializing in improving the quality of life of people living with a long-term illness. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results of following their information and advice on this blog.