I asked a couple of weeks ago on social media what questions survivors felt weren’t addressed enough during the rehab process.
Several people mentioned how difficult it is to deal with role change, grief, and acceptance. These are all interrelated issues and deserve to be talked about. I’ve said it time and again, but mental health recovery is not addressed enough. Rehab focuses so heavily on physical functioning that mental health gets left in the dust.
Grief and acceptance are a huge part of mental health recovery after a stroke, which is why I wanted to dedicate an entire article about it, not just a daily email.
This can be one of the most frustrating aspects of recovery, especially early on. Roles are ingrained into our social structure. When we think of a mother, brother, teacher, or worker, pictures come to mind of who that person is.
We often define ourselves by our roles. For example, I’m a daughter, wife, cousin, niece, friend, and therapist. These roles make up my identity. You can see how when our roles become disrupted, so does our identity. We’re left wondering how we fit into our personal and social structures.
Shortly after your stroke, you may be depending on others to help care for you. You might need help feeding yourself, getting dressed, taking a shower, or going to the bathroom.
This can feel like not only an invasion of privacy, but it’s also associated with feelings of low self-esteem and confidence. You were likely used to doing those basic necessities of your daily life by yourself.
As you continue in your recovery, you may need help caring for kids, cooking, cleaning the house, grocery shopping, and driving. You may feel like you’ve gone from being a spouse, provider, caretaker, or nurturer to a patient, a burden, or helpless.
You are not a burden or helpless, but these are common feelings survivors experience when role changes happen. When roles unexpectedly change, this changes our identity and self-perception which can lead to the grieving process.
Stages of Grief
In 1969, Elizabeth Kühbler-Ross developed the Stages of Grief model to describe the experience of those who are dying. This same model has been applied to stroke recovery as many survivors feel that they are grieving their pre-stroke self.
It’s important to know that people don’t linearly move through this model. By that, I mean people don’t progress from stage 1 to stage 2, then stage 2 to stage 3, and so on. People can bounce around through different stages and skip others completely. There’s no timeline for how long people stay in one stage versus another.
In the denial stage, you may have trouble coming to terms with having had a stroke. You may feel complete bewilderment that this happened to you. This is a protective mechanism. Denial and shock allow us to feel completely overwhelmed by this great change. It will likely take some time to move out of this stage.
You may feel angry at everything in this stage. Anger at yourself or others for the situation in which you find yourself. Anger at the people who are trying to help you. Anger at not being able to do what you used to do. Anger at not doing more before your stroke.
It’s normal and expected that there is some level of anger in the grieving process. The thing to try and remember during this stage is to not lash out. It’s easier to react with frustration to those trying to help you, including family, friends, other loved ones, and your healthcare team. Try to keep in the back of your mind that those around you just want to help.
It may be helpful to tell them that you’re angry and why. It can be hard for those around you to know why you’re angry or how best to help you, especially those who have never seen someone go through something traumatic like a stroke. It may also be good to try and express your anger constructively by explaining versus lashing out.
This stage is primarily about feeling a lack of control over your situation and doing what you can to feel more in control. You may find yourself making promises to a Higher Power if they will only take you back to the time before your stroke. You may find yourself promising to do everything “right” in your rehab in exchange for getting back to normal.
This stage might spur you to participate actively in recovery. This is a good thing, but it’s also important to be realistic about outcomes. Stroke recovery is so different for every person. Some people recover more function and more quickly than others.
It’s also normal to go through a stage where you might feel isolated, lonely, depressed, or in emotional pain. If you had a stroke during the Covid-19 pandemic, this was likely exacerbated by many hospitals not allowing visitors.
You may question why this happened to you or spend a long time thinking about the things you used to do. You may wonder why you didn’t do more before you had your stroke.
It’s absolutely fine to spend some time feeling this pain in order to move away from it. You may have loved ones telling you all the reasons you should be happy or grateful. They are likely well-meaning, but you should take the time you need in this stage without pressure from anyone.
Acceptance sits on a spectrum. It can range from accepting that a stroke has happened to recognizing current limitations and working within them. It can mean accepting your post-stroke self but also being motivated to continue your recovery efforts in the hope of making more progress.
Acceptance will look different to different people, and that’s okay. The hope is that getting to the acceptance stage will help you move instead of being stuck in an emotionally painful place. It doesn’t mean that everything is perfect.
It just means that you’re ready to move forward.