Stroke can bring many changes. Physical skills and abilities, how your body looks, the work and hobbies you can do, your relationships, and even your sense of identity and place in the world can all be affected. Many people find the 5-stages of grief model is a helpful for understanding this. It’s also recognized that an injury like stroke can involve more complex loss and grieving. “Ambiguous loss” and “chronic sorrow” may offer a more useful way of understanding the experience.

It’s not your imagination! At least half of stroke survivors report that they experience neuro-fatigue. The brain has a lot to do in recovery and it has to do this while also healing from the injuries it sustained as a result of the stroke. Learn more about how to manage your energy and how to educate people in your life about this invisible disability.

Pain after stroke is common (reported by about 10% of survivors) but it is often poorly understood and incompletely managed. This may interfere with optimal recovery not only because of the decrease in function that pain can cause, but also because of the profound impact pain can have on your mental health and quality of life. Fortunately, there are resources and methods that can help you work with pain.

Many people experience emotional changes after a stroke. Depression, anxiety and even PTSD affect one to two-thirds of survivors. These often improve over time on their own, but it’s important to get help if they don’t. Left untreated they can impact your quality of life and even interfere with your physical recovery. Fortunately, effective treatment is available, including many resources you can access on your own/at no cost.

Acceptance does not mean that we are okay with what’s happening, that we prefer it, agree with it, want it, or that we will stop trying to change it. Some people find it useful to drop the word ‘acceptance’ and ask instead “Can I agree that this is the way it is right now?” Part of us will never be okay with what we don’t want so making space for the “not wanting” part of us may be a clearer path forward.

Our sense of identity is built from many factors that can all be affected by stroke. This includes how our body looks and functions, the roles we have (in society, at work, with our family), how we are perceived by others, and our personality traits (e.g., being funny, independent, artistic). Loss of identity is a common experience for stroke survivors. It takes time to adjust to losses, to connect with the core of who we are, and to build a new identity post-stroke.

There is nothing like meeting someone who has walked a mile in your shoes. Many stroke survivors say that the most helpful thing in their recovery is meeting other stroke survivors. Research backs up the many benefits of peer support: it helps normalize the experience; reduces loneliness; and provides a connection with people who know what you are going through. In addition to benefitting from the knowledge and experience of others, you may also find that sharing your story is what helps someone else get through a difficult time.

What other topics do you think should be included here? What has helped you in your recovery?