How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part V. The Response.

In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disorder of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers.  In Part II, I describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with.  In Part III I described my escape from the Western medical industry — after 2 years of suffering with only more suffering to look forward to, and no relief in sight, I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and heal myself with medical cannabis.  In Part IV I described my treatment successes as well as the fallout and negative consequences of my decision to leave my partner, my home, my state, my profession, and the Western medical industry behind.  From there, I will let the reader surmise what would have been an appropriate response from friends and family and hope that they are able to provide that considered, appropriate response if one of their own friends or family members fall ill, and to understand that they themselves are unlikely to receive the same considered response under the same conditions and to be prepared.  Being let down by the very people who are supposed to be there for you is a devastating blow.

In this Part V I will describe the actual responses I have received from friends and family regarding my situation which have been so inappropriate, unhelpful and physically and mentally draining that I have had no choice but to cut off all contact with almost everyone I know.

At various points in my journey I have reached out to friends and family for help.  I knew from practicing benefits and anti-poverty law that people can and do fall through the substantial “cracks” in the social safety net and I recognized it immediately when it started happening to me: for example, when I applied for health insurance at the urging of my doctors and was placed on Medicaid due to my meager income, whereupon Medicaid denied the conventional Crohn’s treatment I was already on, and my doctors fired me because they didn’t take Medicaid!  This is a textbook example of the kinds of things that happen to people when they become disabled or chronically ill and even one such incident including denials, delays, mistakes and unintended consequences can cause vulnerable people’s lives to spiral out of control.  The so-called social safety net is more holes than net and most everyone who has tried to access benefits and services in a time of crisis surely knows this.

For me, there were certain milestones along the way at which point my situation was objectively declining and I reached out for help.  The first time was when nearly all my savings was depleted and my next step was to cash in my modest retirement account which consisted of one IRA contribution made in the last year I was employed.  I did so and was able to live on and purchase medicine with the proceeds for a couple of months.  The second milestone followed when that was spent and I had no choice but to start charging rent and living expenses on my credit cards with no foreseeable way to ever repay the debt.  I reached out to several people at both junctures and frankly I was unsurprised at their responses.  I knew from childhood that, for various reasons, my family would be of no help to me in a crisis or otherwise — that’s why I continued with my education and became a lawyer in the first place, because I knew and had reason to know that if anything bad ever happened to me I would be on my own.  I needed to have a “skill” and be a good earner — and maintain good credit — for as long as possible because I knew that when the shit hit the fan I would be all alone with no family willing or able to help.  I likewise did not expect anything from my friends but at least with them I was hopeful — we did not share the toxic history of the patriarchal nuclear family and I had hoped that someone would be able to do something, anything, to help break the fall I knew was coming.  But again, no help was forthcoming.  Those who were able were unwilling, and those who were willing, couldn’t.

The next point at which I reached out for help was after my credit cards were maxed out and I had defaulted on them; my savings was still perilously depleted and I was unable to work on my small business enough to live on.  Again no help was forthcoming and I sold my only asset, my car.  Living in a rural area with no public transportation, this was a very serious decision I did not take lightly but I had no choice.  The equity I had in the car was enough for me to live on and buy medication for another 6 months so I sold it to a local dealer.  Afterwards, they drove me home in my own car and I had to deaden my emotions completely to avoid breaking down in tears, not just because I was in dire financial straits and now had no car but also because the process of selling it had been exhausting and I was absolutely depleted both mentally and physically.  The negotiation process was grueling as I had to put on my poker face, ignore the fact that I was gravely ill, and pretend that I wasn’t desperate and likely to take any shitty deal they offered me.  In the end, I was satisfied with the deal I made and thankful that I had been able to purchase a car with an excellent resale value in the first place even though I never anticipated having to sell it; in fact I had purchased it thinking that if all else failed I could live in it but my sickness wouldn’t allow that.  I am now too intolerant of both extreme heat and cold, not to mention stress, and need easy access to a bathroom, to be saved by what I thought would be my last resort.  I recalled the sage words of my first professional mentor who told me regarding negotiations generally, “Just do the best you can” and in this case, as in every case, I absolutely had.  His words gave me comfort as I sat in the passenger seat of my own (former) car being driven home by a smarmy used car salesman who had just made a substantial profit off of my illness and my misfortune.

The most recent milestone, and maybe the last, is happening now as I write this — having spent my entire savings, liquidated my assets, maxed out and defaulted on my credit cards and destroyed my credit, I am relying on my income from my small business to support me and there is no way it’s going to be enough.  The busy season for retail ended in February once everyone’s Christmas gifts and bonuses were spent and I now face a long, dry summer before the holidays are upon us once more.  If I can somehow survive until October or so I should be able to ride the Christmas retail wave through next spring.  The chances of me surviving until October are approximately nil, and once again I have reached out for help, and once again, so far, none has been forthcoming.  We will see what the next couple of weeks holds.

Now, to be fair, if all I needed was a couch to crash on I may have been able to get some help, particularly if someone was able to make a profit off of me.  Such is the nature of capitalism and patriarchy — everyone needs to make a buck, and if they don’t need a buck because they already have plenty they demand 10.  But because of the nature of my illness I have some needs that are really not negotiable.  And financially I am absolutely wrecked and the chances of recovering from my financial ruin are exactly as good as my chances of recovering from Crohn’s in fact — because the two are directly related.  And Crohn’s is an incurable and progressive disease.  In particular, Crohn’s is a very anti-social disease and requires privacy if my dignity and that of others around me is to be maintained.  I also need to be able to treat with the only substance on Earth that is known to effectively treat the symptoms of, and even heal, the mental and physical ravages of Crohn’s disease: medical pot.  Finally, my 2 adopted cats have turned out to be like service animals to me and I need them as much as they need me — I have bonded with them, they provide me significant joy, comfort and pain relief, and the thought of losing them is unbearable to me and I know my health will suffer from it.  I cannot even think about the effects to their physical and mental health if I were ever forced to abandon them.

To be clear, I understand that privacy is not easy to come by, and that medical cannabis is still illegal in many states and legally perilous to travel with.  I understand that many rental properties do not allow pets and that some people are allergic to them.  I am not suggesting that what I am asking for is cheap, easy to come by, or that most people have it to spare.  But some do.  And everyone, and I mean everyone who only cared to could take a moment out of their day to educate themselves about Crohn’s disease and how disabling it is, or just listen to me and believe me when I tell them, if I even have the energy to repeat the same story a dozen times and most of the time I don’t.  And everyone could try not to respond like a callous, ignorant jackass to someone they are supposed to care about in their most desperate hour who is scared, in terrible pain, or stoned out of their mind, and dealing with far more stress, sickness and bullshit than anyone should ever have to.  I will never be able to forgive some of the people in my life for the things they have said to me and the ways they have treated me since I became ill.  I don’t need money, I need a safe, sane place to live considering my condition.  I need a partner in crime who will support my natural if not universally legal right to treat with medical cannabis since it’s the only thing that actually works, and not surrender me to the capitalist patriarchal medical machine which has nothing to offer me and will torture and maim me anyway.  I need a principled ally who will not stand idly by while I take my chances as a sick female homeless on the street because I had the bad luck to become seriously chronically ill.  Of course I wish no woman was ever forced to be homeless under capitalism and patriarchy but that continues to be my wish.

Here are some examples of the responses I received from friends and family when I reached out for help at every step along the way.  Some of these responses are paraphrased and some aren’t.  If it sounds like I’m a little upset at the responses I received, it’s only because I am.

  • Well we can’t just let you drown!  I just gave all my money to a women’s charity and bought a house in Hawaii but I can send you $50!  Would that help?

 

  • Stay strong!

 

  • You should check yourself into drug rehab.

 

  • You can stay with me, but you’ll need to get a full examination and clean bill of health from a medical doctor first.  If you die on my turf it will look really bad for me.

 

  • You can stay with me but you can’t bring your medicine, it’s illegal here.

 

  • Don’t lawyers make a ton of money?  How in the world are you broke?  Is this some kind of scam?  Text me a picture of yourself so I know it’s really you.

 

  • Just wear a diaper!

 

  • I really think you need to talk to your parents about this.

 

  • Come stay with me!  I totally want to help!  I will buy property an hour away from you and build a tiny house on it!  It’s too small for you and there’s only one bedroom and one bathroom and no privacy and no room for your cats and no room for your business and the septic and water systems I installed are really only adequate for one person so on second thought, never mind, I just don’t see it working out, it’s really only big enough for me.  Thanks for showing me around the area though, what a great place!  My life is so much better since I moved here!

 

  • How can a tummy ache be so disabling?

 

  • Have you tried this, that and the other?

 

  • Good things happen to good people.  I am sure you will be fine.

 

  • Responsible people are advised to have 6 months’ worth of emergency funds in the bank.  I know you had 3 years’ worth but you should have been more prepared.

 

  • Can’t you stay at a hotel?  They are only like $50 a night!  Granted, that’s more than you’re currently paying for rent but anything-times-30 is poor people math and I’m not poor.

 

  • You are a smart, capable woman, I know you will figure something out.

 

  • You never should have tried to treat yourself.  You took an enormous risk and now it’s going to cost you.

That last one is 100% accurate of course.  But I would’ve paid a terrible price either way.  I am confident that I had no reasonable choice and that the decision I made was the only one I could’ve made.  The consequences, as they always are, will be mine alone to bear.

This concludes this series, in which I hope to shed light on the serious physical, emotional, financial, social and other fallout of Crohn’s disease and why it is not “just” a tummy ache, although tummy aches are bad enough aren’t they?  Everything we need to live is in our “tummies” which this fast- and junk-food obsessed, yet poop- and fart-phobic culture downplays constantly as it is.  If your tummy isn’t happy, you will not be happy, and when it goes on for a long time this is the very definition of serious, chronic illness.

Friends and family members: take heed if you wish to be a positive force in a Crohn’s patient’s life instead of a nagging, dismissive asshole wholly ignorant of what Crohn’s disease and treatment entails and how debilitating it is, and how the human body works and what it needs to survive, much less thrive.  If it sounds like I’m a bit angry, it’s only because I am.