Chronic illness is something that many people don’t understand if they haven’t lived it themselves. However, even for individuals who do have a chronic illness, something that is often not discussed is the grief that comes along with having one. This grief comes in regardless if someone is born with a chronic illness or disability or whether they acquire one later in life.
Why would there be grief?
Grief is normal when we think about how much loss comes along with having a disability or chronic illness. If someone has not experienced a chronic illness, it can be hard to imagine what about having one could lead to loss. There’s the loss of friendships or experiences, there’s loss associated with having to give up certain dreams that may not be compatible with the person’s illness. There’s a future that looks different from what may have been originally planned, another loss. Job opportunities, especially when we consider how inaccessible many job locations are, are another thing many individuals with chronic illnesses have to give up.
What does grief look like in this context?
Grief is complicated in any circumstance and there is no standard way of expressing grief, regardless of why someone is experiencing it. For some people, it can be a deep sadness and looks more ‘expected’. Someone will be sad, may cry often, or will otherwise look like the ‘average’ grieving person.
Sometimes it can look like irritability and being snappy or short tempered. Someone may be experiencing a lot of difficulty with controlling their emotions or responses to things. This can be especially true if there is a new diagnosis or an illness has recently gotten worse. It can also be more prominent in times of having to experience one of those losses, such as not being able to go see a friend due to a flare-up.
But if it’s chronic, can’t they just get used to it?
Of course, to an extent, there are certain things you do ‘get used to’ when it comes to being chronically ill or disabled. However, that doesn’t change the fact that there is still constant loss involved. The world that we live in at the moment is simply not accessible to many people who are not ablebodied. Whether it be the buildings we have or the systems that are in place or the social stigma against “not being healthy”.
That’s one of the reasons that there is so much loss involved. Not only is the person experiencing difficulties in their body, they’re also coming up against consistent barriers in life because of how society views disability and illness. Friends eventually stop asking to hang out, many businesses think a ramp is the only thing they need to worry about and call their location ‘accessible’, and jobs still discriminate. Just as you think you’ve ‘gotten used to’ one aspect, something else comes up to remind you that your life is not viewed with the same level of worth as other people. And this in itself can cause grief.
Changing illness can cause new waves of grief
If an illness is progressive, this can be another layer to someone’s experience with grief. For individuals with progressive chronic illnesses, there will come a day where their body does not work as well as it did a week ago, a year ago, five years ago. Finding that something is a barrier now that did not used to be a barrier can be incredibly difficult to process and cope with.
What can I do?
Often, talking to someone can be helpful, but for many people with chronic illnesses, they don’t have anyone they can really talk to. Either they feel like they’re burdening their loved ones or they have been explicitly told not to talk about their struggles with their disability. In that case, it can be really helpful to reach out to a therapist.
