Acceptance in chronic illness. Really? We're meant to accept this?
Refusing to accept symptoms or limitations brought on by chronic illness is a good thing, right? It stops us from giving up, right? It drives us on. It makes us fight harder, look for better treatments or, perhaps, even use it to maintain hope for a cure. It's a great motivator! Well, maybe to some degree but in the long-term, all it does is lead you down the path of suffering. Hear me out.
In the scientific literature, we know that those who cope with their long-term illness from a place of acceptance tend to do better than those who use more avoidant coping strategies. In acceptance, we can regulate our emotions and problem solve within a framework of truth. Getting to a place of acceptance can be hard however. Friedrich Nietzsche once wrote: "Sometimes people don't want to hear the truth because they don't want their illusions destroyed." I don't think he was talking about chronic illness here but he might as well have. To be able to accept a situation, we have to acknowledge the truth of it. To acknowledge the truth, we have to accept that things are not what they were and probably never will be again. That's a hard pill to swallow.
In my life, there has been many times when I've had a really hard time accepting my own limitations and health problems (I live with a connective tissue disorder called Ehlers Danlos Syndrome). It's still an ongoing struggle at times. I remember having a conversation with a woman in a pain clinic many years ago. She was a successful, published author and living with uncontrolled pain from rheumatoid arthritis. We started talking about our tendency to fall back on denial; doing things while knowing very well that we no longer could. Deluding ourselves time and time again that it'd be fine, then suffering the consequences. We were both old enough and had been ill long enough to know better but hey ho, we constantly convinced ourselves we could do stuff against our better judgement and to our own detriment. My stubborn nature would tell me in a very convincing voice: "Oh, I can do it. It'll be alright." Then sensible Ingela would say: "Yes, but last time, it took weeks to get back on track." My stubborn nature would reply: "Yeah, but that was then and this is now - it'll be alright!" And on it went. I never seemed to learn from it but was stuck in a loop of denial and doing too much. I was so desperate to be able to do what everyone else was doing so I'd push myself, only to suffer the consequences. Perceived pressures from others was also a factor, especially from work. I used to hide my illness for many, many years and when I was finally honest about my health, my department actually went out of their way to be helpful and accommodating. I even ended up with the most fabulous desk chair that ever existed! Yet I still resisted. I didn’t want to accept what I perceived as unacceptable.
Health care professionals working with people with a chronic illness (I'm one of them) usually tell people that 'good days are danger days'. Well, that's easier said than done when, on good days, it's the only time you actually get things done! So, you end up doing too much, then suffer for days afterwards. But what's the alternative? I bet you're told 'pacing'. And all this is true but in reality, it's also very hard and sometimes unrealistic. Also, if you live alone, it means lowering your standards and then, you have to accept that too. If you share your life with someone, it means them having to take on way more than you'd want them to. And, yet again, you have to accept that too and deal with the possible guilt attached to it. That means having to practice an awful lot of self-compassion to prevent yourself from feeling like a burden (I will write more about self-compassion in a future blog). And what if people resent you for it? Well, they have to accept things too, even change their expectations. You can't do that for them. But that's a whole other blog post.
I've been blessed with a stubborn nature; a refusal to give up or give in except it wasn't serving me very well. Indeed, my stubborn nature that had served me so well in some situations was also sabotaging my health. I'm talking about the refusal to accept that you can no longer do what you used to be able to do but doing things anyway - to your detriment. I still have days when I can almost hear my late mother shouting to me, "You can do anything you set your mind to!" except, unfortunately, that is no longer true.
I'm now in my early 50's and I can no longer 'get away with it'. I have to compromise, lower my standards and find joy in the smaller things in life. I love gardening but I can no longer garden the way I used to. So, I stick to planting flowers in pots on the patio and get someone else to plant flowering shrubs that pretty much look after themselves. I also have a man that comes once every two weeks to mow the lawn. I'm an extremely independent person so it's hard to accept help let alone actually having to pay someone for it.
The psychiatrist Elisabeth Kübler-Ross once said "Acceptance is not about liking a situation. It's about acknowledging all that has been lost and learning to live with that loss." Indeed, to reach acceptance, we must grieve our losses. Grieve for the life we thought we would have. Grieve for all the lost days. Grieve for all the things we are now unable to do. Grieve for the loss of friends. Grieve the career we had to give up. It means having to feel a lot of negative and uncomfortable emotions. Accepting the truth of something can be heart breaking but the alternative is even worse: suffering. Indeed, emotional suffering is created the moment we resist the truth of something. Resisting the truth can cause an enormous amount of unnecessary long-term stress and may even plunge you into a state of anger, hopelessness and depression.
"Emotional suffering is created the moment
we resist the truth of something."
Acceptance doesn't mean you have to like what's happening but it gives you an opportunity to work with what you have, not from a place of avoidance, and not from resistance, but from acknowledgement and truth. It's about learning to live with what's been lost. That doesn't mean you give up seeking help or resign yourself to what's happened to you by giving up.
However, acceptance is really hard when you constantly have to justify yourself, explain yourself or deal with judgement and lack of support, whether it's from family, friends, work or health care professionals. This is especially true for those of you living with rare, invisible or poorly understood conditions. If you're in this situation, please speak to a psychologist or therapist if it's something you've had a hard time with. You can also join a support group where you can meet people who will validate your experiences. It's so much easier to accept and surrender to 'what is' under those circumstances. Support also makes life more bearable when suffering seems overwhelming.
In most cases, acceptance is a step that precedes surrender. In my view, surrendering is a spiritual practice. Surrendering is all too often confused with giving up. Giving up means ceasing to make an effort; resigning oneself to failure. It's admitting total defeat, saying to yourself, “There is no sense in trying." However, to surrender means to abandon oneself entirely - to give into. So, you can surrender without giving up. Surrendering implies a continued dedication to trying and will likely bring an intense feeling of relief.
Those of you who are not spiritually inclined, sticking with acceptance is absolutely fine! But if you're striving for existential peace, you need to find some meaning and purpose in your life. Easier said than done, right? Indeed, so much has to be re-framed. For example, finding a new identity, or, at least, incorporating a new reality into an existing identity, might be necessary. Your illness doesn't have to define who you are but it's a reality that needs to be acknowledged. It's reminding you of its presence every day so why not allow it to be present without feeling overwhelmed? In acceptance, we don't deny or ignore our difficulties but we don’t allow them to dominate either. They can simply tag along in the back seat so to speak. You're in control so you get to decide who's doing the driving.
So, coming to a place of acceptance doesn't mean resignation. It doesn't mean giving up hope for new treatments. It means understanding that things are what they are. It means accepting your limitations but working with what you have. It means giving up on old dreams and how you thought your life would turn out, then replacing them with new dreams that are more realistic within your illness framework. It means accepting a new reality. Seeing the truth of it. Letting go of unrealistic expectations. As the actor Alan Alda so succinctly put it during a conversation about living with Parkinson's disease: "If we hang onto what we had before, we're in trouble." It's about redesigning your life around facts without giving up. Finding meaning and purpose in a new reality. Surrounding yourself with people who will support you no matter what. And you will have days when acceptance seems a distant concept and that's okay. Indeed, acceptance is something you may have to revisit many times as the years go by, perhaps when faced with new health challenges and symptoms. It's worth the effort!
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 licenced Practitioner Health Psychologist specializing in improving the quality of life of people living with a chronic illness. She runs a private online practice at www.ingelathuneboyle.com and has a particular interest in rare, ‘invisible’ and poorly understood illnesses. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder.
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.