Chelsea Vaught

@chelsea-vaught-1 | contributor
I'm an artist, writer and volunteer baby goat cuddler (really!). I grew up in the midwest, started my teaching career across the Atlantic in London and now work from home in Seattle.

Trump's Birth Control Mandate Repeal Signals Bigger Healthcare Issue

Friday was a difficult day to be a person who uses contraception. It was also a difficult day to be a person who uses medication and healthcare in general. I believe the announcement of the Trump administration’s decision to end the requirement for contraception coverage should have alarmed everyone working for affordable, accessible healthcare. It caused a familiar mix of frustration and anxiety to start forming in my stomach. It was similar to the anxiety I felt abstractly during the threatened Affordable Care Act repeals earlier this year, and the frustration I felt concretely when I recently changed insurance providers. Searching through my new insurer’s formulary lists, calculating my new monthly co-pay for using a specialty drug based on its category (after anxiously hoping to find it on the list at all), budgeting for the inevitable maximum out-of-pocket costs, hoping my current doctors are all still “in-network” and I won’t have to begin my PCP and specialist searches all over again. For those of us living with chronic illness , having someone other than ourselves and our doctors make medical decisions is nothing new. You may not realize how many approval steps there are between you and your doctors’ treatment decisions and actually getting your medication, especially once that medication becomes long-term and insurers realize they’re in it for the long haul. I used to regularly run out of migraine medication halfway through each month, and because insurance will not cover more I’d spend the second half of each month in fear of my own neurology. I also, of course, spent a significant portion of those days lying in bed in severe pain. I can think of three separate months-long delays on MS medicine because of slow-moving miscommunications between my doctor, my insurance and my specialty pharmacy. Switching to a new insurance provider means switching to a new pharmacy, and both have layers of paperwork required to prove that your doctor really meant it when she wrote the prescription in the first place. While my biggest outrage over this contraceptive rights rollback isn’t about jumping through administrative hoops, the idea of HR becoming another entity to decide whether my doctor legitimately prescribed my medication is absurdly frustrating. And this is assuming employers don’t prefer a flat-out ban on all contraception, forcing us to buy medication at full out-of-pocket prices, adding to already excessive monthly medical costs. If employers choose a case-by-case basis, would we have to submit paperwork to “prove” our birth control is used for a purpose that doesn’t offend the organization’s morals? How long would the waiting period be? How often would they need that paperwork renewed? I wonder what kind of hourly commitment is required to add this additional medical approval system to our lives? Additional third-party approvals are not the only similarity between this attack on reproductive health and the dysfunction of American healthcare system in general. Defenders of the contraception opt-out have claimed “responsibility” as one of their primary talking points, insisting they refuse to be forced to pay for someone else’s “choices.” This is a refrain frequently used against the chronically ill, regardless of illness or treatment, implying that illness is a direct result of carelessness and people with long-term medical needs are somehow gaming the system. Supporters of the ACA repeals suggest that making healthcare unaffordable/unobtainable will somehow make people more responsible. When used in the context of contraception, “responsibility” is a way to attack a specific gendered group and push the idea that people wanting basic healthcare are entitled. We are reframed, again, as people trying to game the system into paying for what people not involved in our care have decided are non-necessities. This anxiety and fear is nothing new to the chronically ill. We’ve been through this fight with each ACA repeal bill. The fundamental beliefs behind broad ACA repeals and this targeted limit are the same: healthcare is seen as a privilege, and needing medication you cannot afford seen as a moral failing. Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via areeya_ann.

What People Should Know About Fatigue From Multiple Sclerosis

Multiple sclerosis is exhausting. Fatigue was one of my most severe symptoms during the relapse that earned my diagnosis. It’s still my biggest and most debilitating MS-related issue. It was a big part of why I left my job. It’s affected friendships. I think about and confront my fatigue frequently. I was diagnosed in my 20s, like many people with MS. Being “too tired” in your 20s isn’t really a thing. I remember going to bars while the entire left half of my body was numb and buzzing, barely having the energy to talk. I remember feeling guilty when I finally started cancelling on people, before I had my MRI and didn’t know what was going on with me. I still took a multi-day road trip and attended a wedding, though. The worst thing I thought I could be was flaky, disinterested and/or lazy. We are culturally afraid of laziness, and even three years post-diagnosis it’s difficult for me to convince myself I’m not sometimes exaggerating my fatigue. But I’m not lazy or exaggerating, and neither are you or your friends or family with MS. Here’s what I wish everyone understood about dealing with MS fatigue in your 20s/30s: 1. It doesn’t always seem to have an obvious connection to anything, and the random unpredictability is often the scariest part. The work my body is doing to overcome central nervous system damage and nerve demyelination just takes up a lot of energy. 2. The unpredictability makes me a lot more cautious and conservative in what I will try. It takes a lot of slow risk taking and practice to see where the line is, and it’s constantly changing. A lot of that work is undone with each relapse and new symptoms. 3. While lots of sleep doesn’t reliably improve fatigue, a lack of sleep almost always worsens it. Even one night of less than eight hours feels like I’ve been awake for three days. I’ve driven the wrong way down one-way streets, forgotten names of people I see every day and had vision so blurry I couldn’t recognize my students or the number of the bus I needed to take. I have to be really strict about my bedtime in a way that’s foreign to my friends who haven’t taken bedtime seriously in literal decades. 4. Sometimes mental activity is a lot more exhausting than physical activity. Preparing and going on a job interview will leave me much more worn out by the evening than a day walking around the city. Going to a party and meeting new people is already pretty tiring for an introvert, but throw in MS fatigue? I’m sorry, but I’m probably going to be leaving your party early. 5. Pushing through the fatigue is never a good idea. It’s hard to ignore the messages of never giving up, even when you feel too tired. It’s even harder to say no before you’ve become too tired, but you know it’s coming. FOMO is real, but fatigue (and the fatigue hangover the next day) is worse. I’m still re-learning this lesson too often. 6. Work/life balance is almost impossible. When I worked full-time, my weekdays consisted of waking up, going to work and coming home to lie down and/or sleep. There are no after-work drinks, evening classes or even time to make dinner. It’s often expected that the beginning of your career will be less balanced, but it’s difficult for coworkers and supervisors without MS to understand how severe the imbalance is. 7. Not being able to work full-time, or working from home, doesn’t mean I suddenly have tons of free time. A lot of my day is taken up by budgeting my energy and basic daily tasks. It’s doing the stuff I couldn’t do when I worked and fitting it in around naps and potential very low energy days. It’s frustrating to hear “I’m sure you can fit it in” when I’ve already tried to carefully balance my week’s schedule. 8. There’s mourning involved in how drastically my life has changed. It’s hard to accept I can’t do the same things I used to and what my friends are still doing. Your social life changes and your circle becomes smaller. 9. There’s also acceptance and understanding, and I finally learned how to be a self-advocate. I learned to say no because my body forced me to. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via MangoStar_Studio.

Please Don't Tell Me to 'Think Positive' About My Health

I’m sick of hearing about positivity. I don’t want to consider the power of positive thinking. I would rather be honest about all parts of own my experiences. I became aware of weaponized positivity after the 2016 presidential election. I was terrified my husband would be deported (or worse), anxious I’d lose my healthcare (expensive pre-existing condition here) and I was scared and depressed in general. I wanted to hide in bed and pretend it never happened. One of the first conversations I had that morning was with a colleague. We talked briefly about the election and as he went to his classroom he told me to “stay positive.” It felt more like a command than a reassurance. With each subsequent interaction, I realized his need for my positivity had nothing to do with my experience and everything to do with his comfort. I believe it was positivity used as a silencing tactic. Gaslighting masquerading as support. Since then I’ve been considering what constant messages of “think positive!” actually mean when you’re experiencing negative events. I want to believe that most people encouraging constant positivity have good intentions, but the end result is still erasure of true, lived experiences. I don’t feel positive about my health. Seventy-two hour migraines and severe, disabling fatigue (and thousands spent on doctor and hospital bills) are part of my life, but I don’t think they don’t deserve celebration or a feel-good spin. Asking that I see the “bright side” of shitty experiences is incredibly invalidating, especially when there are many other parts of my life I do see as positive and valuable. I’m not advocating depression or a 100 percent pessimistic view on life, but I believe the ability to see negative emotions as valid and as valuable as your positive ones. I question anyone who praises never complaining as a trait, especially when it’s spoken in reference to oppressed and disenfranchised groups. Disability activists have done great work speaking against “inspiration porn”(ableist content). The same issues apply to the language of forced positivity. If you’re going through something awful, be loud and honest. Don’t hide or sugarcoat negative experiences, and don’t allow others to insist that you do so for their comfort. Speak out about what it really means to have a chronic illness or an invisible or visible disability. No more smiling through the pain. Follow this journey on Young and Well Rested. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: dimabl