Like any major change in life, coming to terms with a chronic illness takes time and you will almost certainly move through the cycle of grief. You will end up taking steps forward and backwards and will experience each step differently at different times in your life.
Shock and denial
Under the shock and denial stage, we find a few different phases that you might be in. It might be that moment symptoms start to show, when you realise that this isn’t going away or when you get a diagnosis.
I don’t remember how I felt when my symptoms started to show as it was so very long ago but at some stage I realised that the pain I was experiencing wasn’t normal and that took quite a bit of getting my head round – why had it taken 20 years of my life to discover this? I then also had a lot of baggage around being ill, being told i was making it up, being told to stop being dramatic etc and this did, and still does, affect how i feel/think about my pain. Because of all of this, I don’t think I really went through the shock and denial stage, I went through a stage of feeling validated instead.
Once you have a diagnoses there tends to be a couple of ways you can feel, or both at once. If you’ve been trying to get a diagnosis for a long time and are fairly sure you know what’s wrong, then it can come as a relief. Especially if you’ve been told time and time again that it’s all in your head, you’re making it up, you’re a hypochondriac etc. The other standard reaction seems to be one of pain and shock – particularly I imagine if you were expecting a diagnosis to come with a treatment and a way of getting rid of the pain.
You may go into denial and push through and try and ignore the pain and fatigue you’re experiencing because you subconsciously don’t want to stop and think about what this means for the rest of your life.
You are also probably more used to acute illness or injury and suddenly are faced with something more severe that you’re expected to live with and to carry out all the normal living stuff with pain.
Pain and guilt
Pain wise, you have to adapt to living with pain and learn and experiment with what helps to relieve your pain. You may also have to decide how to balance things in your life so that you relieve some pain but still have a life, or how much medication you use knowing that the side effects can reduce your quality of life.
Another way guilt manifests is the increased role in household jobs that your partner may have to take on, and in some cases, your partner may have to do some or all of your care. There is also the guilt because your condition doesn’t just limit you, it limits your partners life. If you used to go rock climbing together, you might not be able to any more and even if your partner continues rock climbing, dynamics have changed.
A very common way that guilt shows up is when you can’t do the things you feel you should be doing. Note the words feel and should there.
For clarification, I am not saying you should feel guilty about not being able to do x or y in your home, just that these are thoughts and feelings that are common to people who have chronic pain.
Anger and Bargaining
I think this is probably the phase where you do a lot of googling and getting second, third and fourth opinions in the hope that the answers might change. You might want to stamp you feet and shout “no fair” at the world. You may get angry at medical professionals who tell you there is no cure.
You may become angry at those around you because they don’t know how to help you or are actually making things worse. You may become angry at your body because it isn’t working as it should. Or you may disconnect from your body and see it as something separate from you, something other that you can be angry at.
You may become frustrated because your future no longer looks the same and you don’t know what it will look like. You may prioritise work over home life or get things really out of balance because you are hanging on to your old life with fingernails.
If you’re religious I can easily see that this is when you’d start bartering with your god. What did I do to deserve this? Why me? These are ways that anger expresses itself in the context of chronic illness. You may also bargain with your body – if you get me through x then I’ll rest etc.
There is also anger and feelings of loss (and depression) about losing the person you used to be or thought you were becoming. If you had a great job, very well paid, that defined you, chronic illness might strip you of all of these aspects and leave you unsure about who you are now and how you’re going to meet the bills.
This stage feels like everything is out of your control.
Depression and loneliness
And when things are out of your control, you can’t do anything to change circumstances and can become despondent, giving in to how things are or feeling defeated by your pain.
If you feel your friends can’t understand or the pain is too high so you stop doing things you can very easily become literally isolated and lonely but there is also the emotional loneliness of feeling like the only person in the world who is dealing with this.
I’m stuck with this, life hurts, why bother trying to do anything…
The upward turn
Very few people make depression and loneliness their permanent home. Eventually, you rally. Your body has an innate survival drive, a will to live which overrides the narrative so far.
You may start to seek out other people who have your condition and feel less alone or you may begin to invite your friends back into your life. At rock bottom you have nowhere to go but up and it may take time to get there but you will.
Reconstruction and working through
Here you are starting to figure out who you are with pain. This might be where you start to look for tips and techniques for getting dressed or equipment that could help with cooking. This is a bit of a problem solving stage and the more problems you solve, the more you start to see what you can do instead of what you can’t.
This stage tends to be more energised than the previous stages, you have more motivation and are starting to have a clearer idea of the future – whilst also remembering that pain and chronic illness can be unpredictable.
Acceptance and hope
Acceptance does not mean that what has happened and what you are going through is ok, it means you are no longer struggling against it. Acceptance lets you build strategies and coping mechanisms. Acceptance means you know that you will have a flare up, you aren’t in denial about it, and so you can create a flare up plan.
In the previous stage you may not have quite come to terms with the idea that this is your life, you may not have accepted that flare ups may well happen but here, you know that things will change but that you have the strength to get through them.
Hope is a strange one. I’ve heard people talk about hope as if it means there is a cure and there isn’t for EDS and many other conditions (this tends to come from people who don’t have chronic pain, especially medical professionals). Hope for me means that there is a chance at a better quality of life and a way of living that fits with the pain rather than struggles against it.
I also want to add that in the context of chronic illness, hope can be wasted energy. I was asked many times if I wanted to be able to swallow and I explained that yes, I do, but also I’m being realistic and I don’t think a magic wand is coming along. This was then interpreted by medical professionals as me not wanting to get better when actually it was a case of not wanting to pin all my hopes on something that might never happen. In some ways, hope is a twin to worry, neither change the outcome and both require a lot of energy and brain space. To pin everything on hope can mean you spend your life seeing dr after dr, reading paper after paper trying to find a different answer and this isn’t something I find helpful.
I am not without hope but neither am I preoccupied by it. Instead of future gazing, I chose to spend my energy and spoons on today. And today there is no cure.
I am not an expert but I do live with chronic pain and I do know a lot of people who have chronic pain. Whilst it manifests differently for different people, these are stages which are very common.