Ask HN: HNers with multiple sclerosis, can we get in touch?
I have MS and was diagnosed in 2016. My first relapse was at the end of 2014, during my final semester of graduate school.<p>My brutally honest answer is that I did three things:<p>- I&#x27;m making some really unwise health decisions in order to meet my current needs. In addition to having MS, I&#x27;m the primary breadwinner&#x2F;sole caretaker for my sister, who has bipolar. I was taking duloxetine for nerve pain and realized it was causing a lot of mental slowness, so I&#x27;m going off of it. Likewise, I tried gabapentin and it made me an idiot, which wasn&#x27;t acceptable. So I just cold knuckle a lot of my pain. I&#x27;m also not on any DMDs right now because insurance companies can never allow consistent access. Every time I go on and off my Tecfidera, I go through hot flashes like I&#x27;m menopausal and shit to the point where I&#x27;m dehydrated for 2-3 weeks. I can&#x27;t do that 2-3x a year when some paperwork is late because I HAVE to hold down a job&#x2F;make money. Be ruthless about the trade offs your symptom meds have. (I do love my tizanidine though).<p>- Used my programming&#x2F;computer&#x2F;systems thinking skills to game the hell out of the perverse incentives in our society. I&#x27;ve paid absolutely zilch on my student loans and kept them in constant forbearance since I was diagnosed. I KNOW I&#x27;m going to end up with a disability discharge at some point, why would I pay anything? Likewise, I don&#x27;t save money because I know that when I end up disabled, there are asset limits. So I spend my money on &#x27;fun&#x27; things that either last for years (I bought winter coats that will keep me warm for 40+ years, for example) or have resale value that won&#x27;t be seized. My sister and I switch up how we manage our household financially (and how we present what we do) in order to be a household when it benefits us and not be a household when it doesn&#x27;t.<p>- Shopped out my skills to my new social class. Think of it like being a jailhouse lawyer: There are very few people in the lumpenproletariat (to be blunt, that&#x27;s where disabled people who can&#x27;t work conventional jobs are) with the skills we have.  Or at the lower end of working class society. I&#x27;m working retail at the moment and my physical slowness is offset by the fact that a small business with 5 total employees now has somebody with some IT&#x2F;tech background on staff. They can&#x27;t justify hiring a whole position to do it, but it&#x27;s worth putting up with my memory lapses and being a bit slower for some menial tasks (e.g. cleaning) if I can do the 5-10 hours a week of tech work they need and pick up new tasks like receiving easily to cover staff shortages (because again: five people). If you&#x27;re comfortable going off script&#x2F;your morals allow it, you can do things like writing papers&#x2F;doing assignments&#x2F;helping people game the systems you used to participate in on the downlow. You can earn major bank this way and keep payments untraceable.<p>The biggest advice I can give to you is to sit down and <i>very thoroughly</i> review your morals and where your lines are. You are right to fear the future - we live in a system with institutions that demand our dependence and vulnerability if we interact with them. Hand-outs and help are only given to the truly destitute (e.g. rent assistance usually requires matters to have progressed to the point where an eviction notice has been served), and the game theory&#x2F;optimization answer is to use your skills at navigating professional environments to fake destitution. Or to go outside the system altogether.