I am at a place in my life where I am really struggling to recognize myself. I am giving up things that I love left and right because of my chronic illnesses. And it feels like I am losing myself, my identity. The fact is that chronic illness is more than just physical ailments, although there is plenty of that.
There’s a book, which can be found on amazon, called Good Days, Bad Days: The Self and Chronic Illness in Time by Dr. Kathy Charamaz. She explains that there’s a very narrow view of suffering that tends to be defined as physical symptoms which only ignores or minimizes the broader significance of suffering. She says:
The loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally new ones.
Dr. Charmaz also explains that all of the experiences and meanings upon which the chronically ill person had built former positive self-images are no longer available.
So in my situation, I have spent years building a foundation, reputation, and life working with, advocating for and being a part of the DeafBlind community. But now that my health has progressed to the point where I can no longer do that I feel lost. The identity I built and cultivated within the DeafBlind community was/is a huge part of who I am because it is difficult to talk about myself without talking about my passion for working with the DeafBlind community. Being that most of what I did was directly related; my jobs, my volunteer work, my BA focus and my MSW focus. That carefully cultivated life I watched grow and bloom around me… has come crashing down and now I have no idea what’s left.
It’s not to say that I can’t be me without the DeafBlind community. I can and I will get through this. And yes I have other interests that I can and will pursue. But my goal and passion has been this for so long that to no longer have that be my goal feels wrong. It’s a betrayal to myself and to the community of people who I love.
My loss of self started about one and half years into my diagnosis of IC but Dr. Charmaz says loss of self can start even earlier – sometimes even before a diagnosis is made and it will continue to grow from there.
–Pre-diagnosis: Doctors can easily discredit our definitions of self when we are seeking help for early symptoms. Without a diagnosis, sometimes doctors view patients with undiagnosed illness as neurotics whose symptoms are either nonexistent or psychosomatic,
–Beginning of illness: At first, family and friends demonstrate interest, attentiveness, and assistance, but as time goes on involvement tends to dwindle.
-Worry about burdening others: Especially your significant other.
-Unpredictability: Having a chronic illness is unpredictable. There are good days and bad days. This can disrupt their lives far beyond physical pain, to the point of quitting work, limiting socialization or even avoiding activity.
-Limitation of life: People with chronic illness might be forced into limiting normal activities to protect their health. This can have a big impact on self-image.
-All Consuming focus: Chronic illness can overtake one’s identity. Illness becomes the focus of one’s life as treatment, living with constant discomfort, medical appointments, and issues with daily activities takeover.
What it comes down to is that if you have a chronic illness and you have to give things up that you love… you are not alone. I am right there with you. Thousands upon thousands of other people are standing right there next to you. And we need to recognize this so that when we feel lost we can say that and not feel like we are morons just because we lost our identity. We are more than just one identity… but the feeling of not recognizing yourself is valid.
While reading through information in preparation for this blog I came across an article in Social Work Today called Grieving Chronic Illness and Injury – Infinite Losses. Which is relevant for two reasons, 1) I have chronic illness 2) I’m in grad school to be a social worker. But I think it should resonate with many people because it really hits the points that I’m emphasizing in this post that grieving through chronic illness is okay. It is something that people (i.e. Social workers) are trained to help you cope with.
Isn’t it kind of a relief to know that if social workers are being trained that means it must be somewhat normal? well…somewhat. Either way, the grief might never end. It might just continue on but the best thing that I can do (and you can do) is continue on and try to find the most meaningful life you can live.