Saramax Guttmann

@saramaxguttmann | contributor
Having a diverse community of people with both unique and shared experiences, experiences that often validate one another, lend support and ideas to one another, and offer new perspectives makes me a stronger person in my own struggle with chronic illness
Community Voices

Need advice on how to pay for medical bills as a student

I am considering seeing a functional medicine doctor because I've been having a lot of pain and other symptoms that regularly practicing "Western medicine" doctors are dismissing or not paying attention to. When they do "listen," they suggest prescription meds, which I have tried and am strongly opposed to. However, they're expensive and don't usually accept insurance. I'm considering taking out a personal loan through my bank or maybe using a low interest credit card and doing it anyways. I could also take out additional student loans, but I'm already in about $80,000 of student loan debt. Has anyone else paid for medical bills using any of these methods or seen a functional medicine doctor? Is it worth it? Any advice? Thank you! #ChronicIllness #money #medicalgaslighting #functionalmedicine

14 people are talking about this
Community Voices

Tired.....

I'm so tired.... I just wanna give up.... I cant make anyone understand that I dont wanna think how I do.... its ur mind.... you can help it if u want.... u almost 50 yrs old.... u use ur mental illness as an excuse.... just grow up already..... im so tired of trying.....

11 people are talking about this
Community Voices

Chronic pain college essentials

I’m going to college soon, what are some things if you’ve gone that you would absolutely recommend for pain relief/management? #ChronicPain #College #Spoonie

7 people are talking about this
Community Voices

Ocd health anxiety

I'm completely freaking out. I have OCD and one of my themes is health anxiety. I woke up yesterday to my neck feeling really tender on one side. It feels like there is a lump or it could just be that it's swollen. I smoke but am working on quitting which also just heightens my fear. One of my obsessions is getting cancer which I know it probably isn't but my OCD is trying to take me there. I don't have health insurance which definitely doesn't help my anxiety but right now for reasons I won't go into I'm unable to get it. Anyway it's still early in the morning here but I'm going to text my therapist in a few hours to tell her what's going on. I wish I could turn my brain off. #ObsessiveCompulsiveDisorder #HealthAnxiety #Anxiety #OCD

6 people are talking about this
Community Voices

Do I Have Any Rights Here?

Last night, on my way back from spending the day out, I decided to go to the convenience store. As soon as I'm out of the car, these two jerks start laughing and acting like fools, commenting about how trashy my car is. I told them I have OCD and one of them asked me if I was a hoarder. I tried to explain I wasn't hoarding the trash, but they weren't listening. One of the guys started recording video of my car and even moved close so he could get a good look inside my car. I went into the store, because I couldn't stop them (no one said anything or did anything besides watch), but I was angry and wanted to cry. When I went back out, I didn't see them. I jumped in my car, and drove off as fast as I could. I was really upset. Everybody, look at the freak! Do I have any rights from this when in public?

#anxiety
#ocd
#obsessivecompulsivedisorder
#depression
#panicdisorder
#ptsd
#cptsd

27 people are talking about this
Carly Fox

Stop Pitting Mental Illness and Physical Disability Against Each Other

“We need to make getting mental illness accommodations as easy as getting physical disability accommodations.” The first time I heard this, I was at a roundtable consultation and was in complete shock. I had never heard this before, and immediately saw it as divisive and negative rhetoric pitting physical disabilities against mental illnesses. The second time I heard this, I was providing strategic advice at a consultation. My face immediately hinted at my disbelief (as it always does) and the facilitator asked me to speak on it – which I did, respectfully and hesitantly. The third time I heard this, I was a participant at the Global Youth Disability Summit. When I shared how this was harmful rhetoric, a non-disabled person tried to tell me that my interpretation, as a disabled person, of what the speaker said was wrong. I replied, “I maintain my position, my interpretation, and my lived experience, but thank you for sharing your perspective!” This comment is becoming more and more common as disability rights begin to enter conversations of equity and inclusion and the mental health crisis continues to rage on. While both of these issues deserve to be centered in mainstream discussions, the issue is that it is pushing us in the wrong direction. This comment implies that physical disabilities are easy to accommodate and that mental health and physical disabilities are two completely separate experiences. As a disabled, mentally ill person – I believe this could not be more wrong. Reality Check Simply put, it is hell to get accommodations for physical disabilities. First, we have to receive a formal medical diagnosis – a significant barrier to those facing systemic oppression on the basis of race, gender, sexual orientation, class, you name it! Then, we need to get our physician(s) to sign off on paperwork requesting accommodations – and when you only see your specialist(s) every few months, your accommodations can be severely delayed. After that, you have to get in touch with your landlord, employer, or on-campus disability service provider, or as I like to call them: on-campus disability service denier. From there, you’ll set up an intake meeting where you discuss what accommodations you would like to receive in your classes, assignments, and exams. At my university, we have to opt-in to our accommodations in all of our classes and for all of our exams. This is made more difficult by terribly designed websites and short opt-in periods – and if you miss your period, you miss out on your accommodations. Finally, you often have to self-advocate for your accommodations before ignorant and/or ableist professors, who might accuse you of being lazy, faking your disability, taking advantage of accommodations, you name it! If you are fortunate enough to have professors upholding their legal and contractual requirements to reasonably accommodate you, you can skip the step where you contact your student union’s legal or advocacy resource as you fight for your basic accommodations. Easy enough, right? I will allow that many people promoting this rhetoric misunderstand the reality of getting accommodations for physical disabilities. For some reason, they always believe the only physical disability out there is having a broken leg, and that accommodations are limited to elevators and accessible ramps. I will allow for the fact that a misunderstanding is occurring, but I will also hold these people accountable for using my lived experience as some sort of bargaining chip-slam dunk on inaccessible systems, instead of recognizing it as the valid and consequential lived experience of their disabled peers. Attitude Check When I hear the comment as a mentally ill, physically disabled person, I get the vibe that these people believe that people with physical disabilities are less subject to ableism, discrimination, and stigma, and have no mental illnesses themselves. As someone with an invisible disability that has used mobility aids, I’d like to take a second to recognize able-passing privilege, where you are mainly able to go about your day without being subject to discrimination on the basis of disability. Don’t get me wrong, mental illnesses can definitely face discrimination and stigma, especially when they have physical manifestations. But there is an undeniable privilege in being able to play yourself off as non-disabled and avoid some unpleasant interactions. Going back to the broken leg example, the comment implies that physical disabilities are easy to understand and face little stigma. After all, a broken leg is a broken leg – it usually doesn’t get worse, it’s usually temporary, and no one blames you for breaking your leg. But summarizing the physical disability experience into a broken leg is incredibly problematic! Physical disabilities are incredibly diverse and manifest in many different ways. Speaking as someone with a chronic, episodic physical disability – how my disability presents itself and the accommodations I need vary day to day. Compared to a broken leg, that’s much harder to understand! The broken leg monolith also implies that accommodations for physical disabilities only include elevators and accessible ramps. Not only is this wildly incorrect, it constrains the expansion of new accommodations! At my current school, I’ve been offered a laptop, extra time, and word processing for my hand dexterity issues, and ergonomic chairs, height-adjusted desks, barrier-free classrooms, and close-proximity classes for my mobility issues! If we only consider elevators and accessible ramps as physical disability accommodations, we deny so many people the basic tools they need to succeed. Check-In Aside from dismissing the barriers, discrimination, and stigma faced by persons with physical disabilities, the comment ignores the intersection between mental illness and physical disability. The two are mutually reinforcing: poor mental health worsens symptoms of physical disabilities, and unaccommodated physical disabilities can worsen mental health. People with physical disabilities are twice as likely to have mental illnesses than their non-disabled peers, and ignoring this fact ignores how much the two “categories” have in common. We are all subject to systemic ableism, stigma, and discrimination. We are all being denied our legally guaranteed right to reasonable accommodation, and our right to equal access to education and employment on the same basis as our non-disabled peers. Many of us are both physically disabled and mentally ill! One last nuance before we wrap up: it is hard to get diagnoses and accommodations for mental illness. I would never deny that. I have jumped through those hoops and over those hurdles. Mental illnesses are subject to different types of medical diagnoses, procedures, and treatments. They face different types of barriers, discrimination, and stigma. They require different accommodations than physical disabilities. They definitely face misunderstandings and misconceptions about their nature and manifestations. I think we can all agree on that. But we should also all be able to agree that furthering the misconceptions and stigma towards other types of disabilities is a futile and undermining attempt to better our respective rights. Why are we trying to tear each other down when we can work together? If you want to play oppression Olympics and vie for that gold medal, I can’t stop you. But when you realize that the medals are only awarded to weigh you down, you’ll know where to find me.

The Problem With Saying Something Silly Is Giving You PTSD

I’ve noticed a disturbing trend on social media lately. Sure, it’s harmless in intention as these things often are, but it is nonetheless damaging to people living with post-traumatic stress disorder (PTSD). And, since it’s relevant, I feel the need to clarify: I’m talking about the reality of PTSD here, a debilitating disorder caused by traumatic events, diagnosable by certain criteria. I’m not talking about vague discomfort at a memory or situation. I’ve seen it too often on social media and in real life — people saying things are giving them PTSD just because they don’t like them. After a quick scroll on Twitter, I could find people referencing “glitter PTSD,” “eyebrows giving me PTSD,” and “long denim skirts give PTSD” because they didn’t like the fashion trend. Let me make this abundantly clear: I am in no way calling individuals out to be harassed or contacted in any way, as I know they are likely speaking without a full understanding of the nuance of their words. However, their examples offer a prime opportunity for growth. PTSD is not feeling a little uncomfortable. PTSD isn’t caused by a memory or reminder of a vaguely unhappy time, a bad episode of a TV show, a fashion trend we’d rather forget, or any other example I’ve come across that has made me roll my eyes in exasperation. We’ve shared before what PTSD really looks like, but I’ll rehash it here. PTSD is debilitating and life-impacting. It’s often caused by a traumatic moment (or multiple compounded traumatic moments) and can cause physical changes to the biological structure of the brain. It’s flashbacks that feel like re-experiencing the traumatic event over and over again. Imagine, if you will, something truly horrible happening to you; something completely life-altering, harrowing, terrifying. Now, imagine the simplest moment that forces your mind to recall that event in vivid, excruciating detail. It might not even be visual or carry with it the smell and the sound of the event, as somatic flashbacks cause physical reactions in the body without the presence of actual memories. This is what we mean by being “triggered,” yet another term that is often used without a full understanding of its meaning, and which is often damaging to those living with PTSD. Because if a person you know is living with PTSD and does not realize it, misuse of the word leads them down an altogether different path. It tells them, “PTSD isn’t real,” or, “It’s not a big deal, you’re just overreacting,” and may lead to that person not seeking the help that they deserve. Every time we describe something vaguely uncomfortable as “giving you PTSD,” we actually harm someone struggling in silence, whose voice we are actively silencing with our facetiousness. By using these words without the seriousness they deserve, we strip people of the safe space these words provide. These words need to be taken seriously so that, if a person does open up about their experiences, they can feel safe in the knowledge that they will be understood and cared for. That’s why we cannot allow these words to lose their power. They cannot continue to become a part of our common vernacular in a way that minimizes the damage they represent. We have already allowed depression to become synonymous with sadness in a way that means people, like me, do not understand what they are going through until it’s already hollowed us out. And then there’s obsessive-compulsive disorder (OCD), a debilitating disorder that has, instead, become synonymous with cleanliness, perfection, or vague discomfort at patterns that are slightly “incorrect” or displeasing to the eye. These misconceptions fail to grasp the real horror felt by those actually living with OCD. As we try to move into an age of enlightenment free from stigma and misunderstanding, let’s make sure we educate others on the truth behind their words. Even if they aren’t meant with malice, they still cause harm, still threaten to cause people to hide their truth, and even one person struggling in silence because PTSD is treated as a joke is one person too many.

Kateland Kelly

Abortion Provider Shares Story of Helping Pregnant 12-Year-Old Girl

“I want her to feel pain.” A lump formed in my throat; medical school never prepared me for this. Before I could formulate a response, he let go of his wife’s hand, crossed his arms, and spoke more forcefully through gritted teeth: “I want to know how to make her feel as much pain as possible so this never happens again.” “That’s not what’s going to happen today,” I started tentatively. The mother sniffed and interrupted wetly, “I never wanted this for her. We got pregnant when I was just 15…” Before she could continue, her husband cut her off, “Enough talk! Let’s do it. Right now. I want to watch.” When I think about my first abortion patient, the story haunts me — not because I guided her to the best choice for her, but because I watched as her father tried to use medical care as a tool for punishment. This tactic is not as uncommon as you might think. You may even be guilty if you’ve uttered the phrase, “If you don’t behave, you’ll get a shot.” Medicine and fear are intertwined for many, but when we talk about the reality of medicine, we can start to deconstruct superstitions and stigmas. This is especially important in terms of sexual education and health. When her parents scheduled the visit, they said they needed help addressing her interest in boys. They suspected she had a boyfriend that was sneaking into her room at night. They were a conservative Catholic family and in the state where this took place, the public school system did not offer sexual education. Children raised without access to comprehensive sexual education lack basic bodily understanding and are at risk for early pregnancy, sexually transmitted infections, and assault. I meet first with the family together, then I separate them for individual histories. In this case, the child, 12 years old, refused to speak in front of her father. She was obviously afraid of him; she was suffering. In my office, she admitted she had a boyfriend, a 12-year-old from her class, and that his older brother had been helping the boy into her room at night. When I asked her if she has ever had sex, she wrinkled her nose and shook her head. I asked her if she knew what I meant by that question. She admitted that she didn’t really know what sex was but they had “definitely never done it because I always keep my clothes on.” The conversation then turned to menstruation. She had menarche (first period) only three months earlier but had not had another bleeding episode since. As soon as I started that line of questioning, I knew where it was going; I just didn’t anticipate how the father wanted to make it end. As I gently informed her that she was pregnant, she kept asking if she could just go home. She promised she wouldn’t talk to the boy anymore. She didn’t understand why everyone was so upset. When asked if she wanted to be a mom or have a baby right now she wondered out loud, “Why would I want that?” This case was complicated; but then again, every abortion case is complicated. My heart broke as I informed her that because she was under the age of 15, the Department of Child and Family Services needed to get involved. Frankly, even if the child wasn’t pregnant, the way her father said he wanted to watch her feel pain set off red flags. She wasn’t safe in that home. It was as if she were a dog that needed to be beaten into submission for getting knocked up by the neighborhood stray. Truly, the way he spoke about his daughter’s reproductive circumstances had about as much respect as a cattle farmer discussing breeding. His daughter was a creature in a pen and in that moment, I knew my job was to protect her as a living person, not as an incubator. The Department of Child and Family Services took over that evening and she was referred to the closest high-risk OB/GYN. We determined she was approximately six weeks pregnant and would qualify for a medical abortion. Repeatedly and consistently, she verbalized she did not want to be pregnant, she did not want to have a child, and she chose her life. She wanted to stay a kid. The sanctity of the provider/patient relationship is why she was able to access the medical care she needed. At our follow-up, she was depressed because her parents had taken away her phone and she could not talk to the boy anymore. After everything she experienced, she still demonstrated a lack of bodily understanding that can be directly traced to the intentional prevention of sexual education. If she had been taught that you could get pregnant without taking your clothes off, perhaps this entire case would have been avoided. While her father was advocating for “the most painful possible way” to deal with her circumstances, his reaction highlights just how dangerous it is for uninformed adults to be making decisions in medicine instead of investing in education. Her father had no understanding of maternal/fetal medicine, but he knew he wanted her to feel pain, so he was advocating for a surgical abortion. Medical abortion is the combination of an antiprogesterone (mifepristone) and a prostaglandin (misoprostol) and can be used in pregnancies up to 11 weeks gestation. This combination of medication induces a shedding of the endometrium and any attached cells, and the effects are heavy bleeding, nausea, vomiting, and cramping. While not pleasant, it does not carry the risks of surgical abortions which are indicated in later-term pregnancies. A surgical abortion would have been unnecessary and cruel, but that’s exactly what her father wanted and he wanted to watch. He wanted to punish her for his mistakes. Rather than break the cycle of early pregnancy that he and his wife experienced as 15-year-olds, they chose not to teach their children about sex until one was already pregnant. There was a lack of trust in that family. No one talked to each other until they talked to me. I know that every conversation I have with my patients is dependent on that sacred trust, but patients lose that confidence if they are not assured that the provider is working on their behalf. Medical providers cannot practice medicine when men meddle without so much as a basic understanding of science. Ten years ago, we had the autonomy to help her make the right decision for her. Today, we don’t. I don’t know what will happen next in clinics across the United States in a post-Roe v. Wade climate. I do know that when we weaponize medicine, the most vulnerable in our society suffer and it will be the children that are born into this world that pay the price. Prevention starts with education and there is no place for stigma in medicine. Just like any other medical procedure, it is time we start sharing our stories about reproductive health, because if we don’t, we will continue to suffer the little children.

How Roe v. Wade Reversal Affects Access to Autoimmune Treatments

It’s essential we recognize the woman’s body as a whole, medical, human body. At conception, women may have autoimmune diseases, multiple sclerosis, cancer, depression, and a myriad of other physical and/or mental illnesses. The medications and treatment we receive as women, the choices we make about treatment based on what works, and personal beliefs belong to the patient and should remain a conversation between the doctor and the patient. Women have only been involved in most medical studies since 1986, and women make up 80-90% of individuals with autoimmune disorders. It’s no surprise then that the medical community lacks a comprehensive understanding of autoimmunity. Other women in the chronic illness community and I speak for hours about the walls we hit when trying to get diagnosed, being called hysterical, a hypochondriac, and told, “it’s just stress.” Given the fact that women have a higher tolerance for pain on average than men, one would hope a woman would be heard when she voices pain. A friend of mine with psoriatic arthritis had a rheumatologist who would not treat her with methotrexate until she had an IUD put in her uterus. For many autoimmune diseases, methotrexate is a first line of defense, and often an effective medication for combating arthritic symptoms. A fellow Mighty member wrote about her experience with a doctor in her story, What I Learned When a Doctor Put Her Bias About Medication Above My Needs, “ “What do you mean I have no other options? What about methotrexate?” She replied, “Eh, I don’t really like giving out that medication, because I had a 17-year-old girl who was on it and she got pregnant.” I am thankful I was able to get methotrexate. My rheumatologist informed me that if I plan to have a child, I should discontinue methotrexate during the time I am pregnant. I have no plans for kids, so I take methotrexate. I have lupus and psoriatic arthritis, and no biologic has been effective at treating either. I choose to take methotrexate, Otezla, and chloroquine because these are the medications that give me the most relief with the least awful side effects. We must understand that women’s bodies work as entire ecosystems — poorly-understood ecosystems. Thinking about our reproductive system as though it exists independent of the rest of a woman’s body leads to danger and harm. We see doctors already taking the liberty of making medical decisions for women based on the hypothetical that a woman could become pregnant, and entangling that hypothetical with the doctor’s personal views. Overturning Roe paves the way for a far deeper loss of medical choices, predictably in the chronic illness community. We must fight to ensure the care and treatment of women, and to enable continued research and respect for women’s bodies as medically important. This will lead to greater medical advancements as a whole, and will help protect the entire chronically ill community.