As I have mentioned here before, Crohn’s patients talk openly amongst themselves about the hideous realities of Crohn’s disease but these things are mostly not shared outside Crohn’s communities. Please watch this video in which a Crohn’s sufferer sums up the heinous reality of living with Crohn’s including extremely prevalent “suicidal ideation” which is completely and utterly taboo in some cultures including American culture for whatever reason. Listen to the medical and bodily horrors this woman has experienced, the shared horrors many Crohn’s patients suffer or at least can relate to, and assuming they have been blessed with the gift of imagination can probably imagine they themselves may have to face in the future as a result of their shared incurable, largely untreatable, progressive disease. The Crohn’s experience is literally a bloody horror show nearly beggaring belief — can you blame them for only wanting to tell the truth to other people who are going through the same things? This woman has a severe manifestation of Crohn’s called Fistulizing Crohn’s and after struggling and resisting for years recently submitted to an ostomy surgery and will have an ostomy bag for the rest of her life.
I learned a lot from her video where she has experienced severe multiple and ongoing iatrogenic illnesses and injuries from conventional Crohn’s treatments that don’t even work and which I have mostly been able to avoid by seeking alternative treatment with medical cannabis. And she seems to have the help and support of family and friends — although she has food, shelter and her basic needs met by people who are willing or able to offer it, she is wracked with negative feelings about “burdening” her loved ones who clearly care about her and who she says are also willing to listen. I have thought about that too of course, and I never wanted to be a “burden” on my family who I already knew would be unable or unwilling to handle the load but she’s absolutely right that there’s yet another landmine out there waiting for me as a chronically ill person who now needs long term care and concern from other people if I am to survive. If anyone is ever able and willing to help me, it is likely to be bittersweet. Absolutely, exactly right.
No one understands what Crohn’s disease is really like unless they have experienced it themselves and now that I also suffer from it I understand other Crohn’s patients and other chronically ill people better than I did before. When I was practicing benefits and anti-poverty law many of my clients were chronically ill on top of being extremely poor already, or in some cases the chronic illness is what caused their lives to start spinning out of control. Unfortunately for my clients, although I was already beginning to struggle with my health and was having good days and bad days of my own (which struggle, sadly, often left me without much patience or empathy for others) at the time I was still carrying on, was pre-diagnosis, and had yet to experience for myself what a disabling, unpredictable, long-term illness was really like. As a relatively healthy person I simply had no idea what my clients were going through and now that I know what I know, I’m not surprised that they mostly didn’t bother telling me about it. In this video, the same woman describes what it’s like in the beginning of a Crohn’s flare.
This is the same woman whose Crohn’s origin story I shared in a previous post. Here, she seems to be having a mostly “good day” and a good stretch where her new medication seems to be working “okay” but she is still not completely sold on it. She has regained her weight, is able to eat again but she is obviously still sick — if she wasn’t still feeling like utter fucking shit she would be singing the praises of her newest medication but she’s not. This is the reality of living with an incurable, mostly untreatable, confounding autoimmune disease like Crohn’s. And no one understands any of this except those who have experienced it themselves.
Although it is too late for me to properly empathize with my chronically ill former clients directly, and I am extremely sorry for that, I now know the answers to the questions I asked myself at the time such as why they seemed literally overwhelmed by filling out yet another form (or many forms) when they came to see me. I now understand why when I tried to “interview” them they sometimes were reluctant to answer my questions or rolled their eyes or gave me a pained, soulful look I didn’t understand at the time — it’s because they had already told the same fucking story a thousand fucking times before and gotten nowhere and many of them likely already knew there was nothing I could do to help them (because no one could) and most times they were right. And although it was confounding and annoying at the time, I now understand why many of them were late for their appointments with me or why they didn’t show up at all. Now I know that when you are seriously ill, have been that way for a long time, and have little or no hope of ever being well again, all of this bureaucratic bullshit on top of what sick people are already experiencing is simply more than anyone can or should be expected to take.
The impossible burden as well as the injustice of making chronically ill people jump through hoops to get what they need — and then in the case of legal services often not being able to help them anyway due to the eligibility requirements of various public and private benefits — is crazy-making and cruel and it was my role as an attorney to subject chronically ill people to it anyway. I don’t even know if getting proper “empathy” from me under those circumstances would’ve helped them, but it certainly couldn’t have hurt and I regret that I was unable to give them even that; while I felt I was able to empathize reasonably well with their plight and their neediness generally, I simply had no idea what they were going through when they were chronically ill on top of it. Making matters worse, I was working within a medical setting at the time where we received patient referrals from medical providers and unsurprisingly, the medical providers seemed rather without empathy for these people — for their own patients — too. I will never forget one referred patient I saw, an elderly Spanish speaking man who giddily relayed to me that everyone in the neighborhood was following and surveilling him and he wanted me to make it stop. Other than calling the police if he felt threatened there was nothing I could tell him to do, but I suspected that this was more of a medical or psychiatric issue than a legal one anyway, and surely his medical team knew that when they palmed him off on me and I wasted even more of his time. Knowing what I know about the capitalistic patriarchal medical machine and how it treats the seriously and chronically ill people in its care, that doesn’t surprise me at all.
Having been seriously chronically ill myself now going on 6 years, I have told the same fucking story a thousand times too, I have exhausted myself asking for help when none was available or forthcoming, I have heard the truly demented things people have said to me which seem based in a fundamental disbelief that my pain or symptoms were “really” as bad as I said or that I was “really” as disabled as I appeared or that I was “really” as needy as I seemed when I have been unable to keep up with day-to-day things healthy people routinely accomplish every day. It has been unbelievably isolating and crazy-making to be gaslit by everyone who thinks they have a fucking clue about what chronic illness is really like but they have no way of knowing and haven’t even attempted to educate themselves about that as best they could, and the only way anyone will be able to do that is by listening to the only people who know and therefore the only ones who will ever be able to tell anyone else what it’s like (and we don’t even hear from the sickest ones because they physically can’t) — the actual people who suffer from the disease themselves.