I live with my parents out of necessity.

I moved in with them before the onset of my physical illness for reasons that I’m not going to get into in this post.

I’m treated like a spoiled brat for needing the help that I need (I’m not going to get into those specifics here either) and not being able to help in the ways thay I am not.

I, of course, internalized this. While I know this isn’t true, my spoiled bratness, I nevertheless gaslight myself constantly (Maybe I don’t need help with that. I can do it, I’m just (insert any number of negative and untrue things), which leads to me overdoing and making myself sicker, thus needing more help, getting more negative feedback and gaslighting myself some more….

Sigh

I read a book recently, How to Be sick: A Buddist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I’m not going to give a full review of the book here, I found some things problematic but it was worth the read (if you read it, let me know what you think). What really struck me was the amount of support she received from her husband (also unsurprisingly, she received much better care and much more support from her medical team than I could ever dream of. Being that she is not a poor woman with a history of psychiatric issues but instead a wealthy white woman with a career in academia, she was actually taken seriously both when she became and continued to be sick). Toni’s husband, of course has had struggles with the change in his life due to his wife’s illness but it appears that overall he does not blame her, he takes on the extra responsibilities that are necessary and… He does things to try and make her existence more liveable (like not just cook for her but make her delicious meals for dinner every night) because he gets that however hard this is for him, it doesn’t compare to how hard it is for her. Reading this, I felt both hopeful and so extremely sad. It fills my heart to know that there are people who do try and understand and that there are people with chronic illness that are not living my experience but… I know that it’s privilege and most of us do not have that privilege.

I’m gonna let you in on a little secret (or maybe it’s not a secret, maybe you’ve heard this before but it feels like a shameful secret), many people who are living with chronic illness, at some point or another have had the thought/feeling that they wish that they had cancer instead of their specific illness, myself included. Do I actually wish that I have cancer? Fuck no. I don’t think anyone really does but the feeling/thoughts come up none the less. Some people reason that with cancer, there is treatment. You get treatment and you either get better or you die and that seems better than living in constant misery for the rest of their lives. That’s valid, though I don’t subscribe to that reasoning myself. I know that some people do recover and I have hope that I will. Should I not then I believe that this is my path and I would have to come to terms with that at some point.

My reason (and others I’ve spoken to/read about) for feeling this is that people take cancer seriously. They treat people with cancer like they are very sick and many offer help. There are organizations that offer free help to cancer patients, things like cleaning and grocery shopping. There should be. Don’t get me wrong, I am glad these services are available and if anything wish there were more but… why aren’t these same types of services available to those of us with debilitating chronic illnesses?

Many of us have no support. No one really even believes us. As far as I know there are no services to help us (if I’m wrong, please let me know), but I, and many others are unable to do these things for ourselves.

I was really sick before I moved out of the mold. When I moved out, as happens when you body starts to detox, I got sicker. Then I got even sicker when I actively started trying to detox. Then I got covid and the amount my illness has increased is indescribable. I was unable to do things like cook and clean when I was sick initially, now….sigh.

I’m lucky that I have support but I get very little help and a whole lot of shame and guilt from them. I guess all I’m saying is that there are a lot of people like me. We need you to listen to us and believe us. If you are able we need your support. We need help.