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Invisible Disabilities

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(Braeden Pelton/The Collegiate)

By Elizabeth Preston and Braeden Pelton

The following are a collection of individual stories of the life of Grand Rapids Community College students, all of whom live with one disability or more, you just can’t see them at first. Each disability will have a link to a website if you would like to learn more.

Maddie K, 19, Grandville, She/Her

I have four major conditions, Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and Mast Cell Activation Syndrome. I also have some smaller issues such as chronic migraines, PSD, anxiety, and ADHD. 

Living with these disorders has its challenges. I was around 15 when I was diagnosed with EDS, around 16 when I was diagnosed with pots and mast cells, and 18 when I was diagnosed with gastroparesis and ADHD. I’ve had all these things my entire life my entire life yet it took years and years to get diagnosed. Most days I’m fatigued, in pain, and or sick in some way or another. Things as little as showering or eating can exhaust me. I can dislocate my hips, shoulders, knees, elbows, etc. just by putting on my clothes. I have missed countless days of school due to doctor’s appointments, procedures, hospital visits, and just not feeling well. People with disorders like mine refer to their energy as “spoons,” for a typical person let’s say you have 10 spoons for the day, showering and getting ready takes one, going to school takes two, working out takes two, etc. at the end of the day you still have spoons left to go hang out with friends or whatever you may want. This is very different for people with invisible disabilities. Showing and getting ready takes three, the school takes four, eating takes two, etc. We have to try twice as hard to keep up with our friends. I hardly even got to hang out with my friends because I was always too tired or sick or in pain from the day. It is also hard because people don’t see why we are so “sick.” On the bad days when I need to park in the handicap space because I can barely walk or leave early because I’m passing out and sick or have a bag full of prescription pills just to get me through the day. People tell me on an almost daily basis that I look “healthy” and I don’t look or act sick. You can’t always see what a person is going through or how they are feeling and assuming based on how someone looks can be very hurtful for people with invisible disabilities. 

Going to GRCC with invisible disabilities has been rough. Some days I can’t make it to class, because I’m so sick I can’t get out of my bed so I fall behind and miss information. Most of my professors have been great, very accommodating, and understanding of my situation, giving me extensions when needed or sending me notes when I’m gone or adjusting assignments so that I can complete them. However, some have been the complete opposite. Some professors refuse to work with me at all, they don’t understand my daily struggles or that I can randomly get sick for weeks on end or fall behind because I ran out of my meds. These are not excuses, they are just examples of what could happen which is why I have an accommodations list. I am allowed extra time on tests because of my ADHD, extensions when needed because of health issues, class notes, presentations, etc. even though I have these accommodations some professors refuse to use/accept them. I don’t have these so I can get a leg up and get ahead of everyone, I simply have these in place to “keep me in the race” with all my other classmates. Just completing all my classwork and going to class is hard. Because I am in college I need a job which I have had since before school started. For the typical person balancing a job and school is not fun but doable, for me, it is nearly impossible. After work I go straight to bed. My body is too exhausted to do much of anything. Sometimes I need an entire day or two just to recover from previous days. It is extremely hard to balance a job and school when you have an illness like this. 

Ashley Ledford, 21, Hudsonville, She/Her

My name is Ashley Ledford. Invisible disabilities are something that needs to be screamed from the rooftops because not enough people know about them. I have many of them including three different types of arthritis, three different types of chronic migraines, and all of my tendons are short making all of my arthritis issues worse.

I guess I’ll start with when I was diagnosed. Actually no, I’ll start before then because boy is it a story. Long story short, I was in a lot of pain for a long time. My mom, who is a nurse, suspected I had arthritis back then, but no doctor would listen to us. A couple of them literally told me I was making it up and that it was all in my head! Imagine how that made me feel. It took five long years to diagnose me with arthritis and by the time I was diagnosed, I had permanent joint, tendon, and ligament damage. It wasn’t too much damage that anything needed to be replaced or anything, but enough where I will always be in pain for the rest of my life.

After a short crying session with my mom after finally figuring out what was going on with my body, and trust me, we were relieved that I had arthritis at first, we were sent home with a trial of a medication with promise of the prescription on the way. I failed four different arthritis treatments before I got on the correct treatment. Now, five medication treatments later, a little bit of therapy, and six more long years, I’m doing a lot better.

One of my favorite song quotes from one of my favorite songs is “I want to learn to live and not just be alive.” I believe we all need to do this. We all need to learn to actually LIVE our lives and not just pretend to be alive. The world is so much more beautiful than our circumstances. We are survivors, not victims. That is what I want people to remember. 

I have Rheumatoid Arthritis, Spondylitis Arthritis, and Enthesitis Arthritis for the three different types of arthritis that I have. For the three different types of migraines that I get, I have two in my head that I get and one in my stomach. The two in my head are from stress and tension and the one in my stomach no doctor has been able to pinpoint why I get. Basically, take a stomach ache and multiply it by 10 then add pain on top of it. That is what my stomach migraines feel like. I also have short tendons, which means that for my arthritis, since all joints have tendons connecting them, all my tendons are also enflamed. Normally, a person with arthritis wouldn’t always have inflamed tendons or ligaments, but I am more prone to it because my tendons are short.

From age 10 I have been in pain. I don’t know what it feels like to NOT be in pain. Someone could try to describe it to me and I wouldn’t be able to imagine it. I just don’t know what it is like anymore. My life is painful. Between the migraines and the arthritis, there are days that I don’t even want to get out of bed. Sometimes I physically can’t get out of bed because of my arthritis. I’m just in too much pain. But it’s not all bad. I have had a lot of encouragement and support in my life. Not only from my family, but from my friends and pretty much everyone around me. I wouldn’t say that I am a victim, but a survivor. And I am not only just surviving, I am living my best life!

Some of the things that can be difficult with my various disorders are for one, getting out of bed. I have what are called “flare ups” with my arthritis. If I am in a particularly bad one, I will have to call off everything that I am doing that day because it could take me hours to get out of bed. Not because I’m not motivated to do so, but because I’m in too much pain or I’m too stiff. This also means taking a shower or doing other mundane everyday things like cleaning and cooking can be hard. With my migraines, looking at a computer screen for hours on end is difficult unless I can find some way to change the color of the background from white to a tan-ish color (Basically a book page color). Concentrating is extremely difficult with a migraine. With some of my migraines, they are so intense that I have to wear sunglasses indoors because just subtle light hurts my eyes. Any sound can also send me into a whirlwind of pain in my brain.

My time at GRCC has been difficult. I’ve done my very best, but I feel like I’ve had the cards stacked against me with my disabilities. I’ve failed two classes because of my disabilities either not allowing me to concentrate on tests or just not allowing me to show up for school. I’ve also had to take a slower program and graduate in three years instead of two like most students. The degree that I am going for is an accounting degree. For me, accounting is like putting together a puzzle and sorting numbers. I’ve always loved puzzles and sorting, so it’s just what I’ve always wanted. But I’ve had to try a lot harder than a lot of people to get where I’m at now. I’m mostly an A or B student, so I’m proud of that, but the two failed classes really discouraged me. I actually considered dropping out but my parents kept me on the right track, thank goodness!

Aaron Flynn, 27, Grand Rapids

In high school, I was evaluated by a school psychologist who put in my evaluation that he believed I was not intelligent enough to succeed in college. As of right now, I have my (ADS) Associate degree in science. I am about to start my last semester of nursing school. I also tutor anatomy, physiology, microbiology, genetics, and general biology.

Growing up with dyslexia has been difficult, not because it makes life difficult. But (because) dyslexia is not very well known. People are quick to judge me because I don’t spell everything correctly. The other thing that makes it hard is that our society takes written tests to determine intelligence. When you have difficulties reading and writing, you might do very poorly on a test, but you’re very knowledgeable in a subject. As Albert Einstein put it, “But if you judge a fish on its ability to climb a tree, it will live its whole life believing it is stupid.”

For the most part, my experience at GRCC has been pretty smooth. I had some difficulties when COVID happened with my accommodations. But as of right now, those have been fixed.

I hope one day people can be more knowledgeable about hidden disabilities and that our education system can change and help support others like me to succeed.

Hillary Squires, 29, Holland

I  have ADHD (Attention Deficit Hyperactivity Disorder), but I also think there’s some autism or HSP (Highly Sensitive Person). I lose all focus in school at the sound of someone breathing. Loud noises are really bothersome. I grew up undiagnosed. I was bullied by kids, teachers and my parents when I expressed I couldn’t focus. I got called lazy, and my parents even told me I wasn’t smart enough to go to college which deterred me from going sooner. 

Getting diagnosed later in life was a total game changer, but it’s still hard to carry out normal tasks. GRCC has been so great at accommodating me with extra time on tests. At times, I have felt that some teachers don’t understand and other people treat it like it’s not a real illness. If I tell my friends I take medication for my ADHD, I get told to change my diet so I don’t have to be on medication, but medication has helped my mood, and (helped me to) push through assignments that are overwhelming. I no longer feel depressed. It’s annoying especially when I do care about my health and eat whole foods and exercise as a supplemental treatment, but I need medication. 

I also think there’s some ADHD traits that are good. Like being able to hyper focus or think fast in case of an emergency. I think ADHD also makes me creative and spontaneous. I like to rearrange furniture, try new things and go to fun places. Being bored is the worst, so I like to keep life interesting.

Anastasia Anthony 19, Grand Rapids

It has been a long road to try and learn social rules (with autism and anxiety). Autism Spectrum Disorder or ASD is a neurological condition that can hinder our social, emotional and physical abilities. Sometimes I can get anxious when I’m in class, or I’m fidgety and others don’t seem to wonder why. It’s important to understand that autism comes in a variety of different forms: from nonverbal to social it’s important to be inclusive of all people on the spectrum. 

Sarah Kramer, 23, Grand Rapids

I was diagnosed with some type of anxiety when I was very young, probably sometime around kindergarten. I worried a lot about college and taxes back then. I was tested with ADHD when I was around 7. I was diagnosed with type 1 diabetes when I was in seventh grade. And now, just this past December, I was diagnosed with GERD (Gastroesophageal Reflux Disease) and gastroparesis.

Each of these things played their part in my life. But the most impactful growing up has been diabetes. In the beginning, I saw diabetes as just another hassle. I didn’t properly take care of myself, and that landed me in the hospital more than once. As time went on, I got bitter about it. I hated diabetes and the way it made me feel. It was one of those ‘why me?’ situations.

Having diabetes means I must carry around a lot of snacks and medical supplies. When my blood sugar goes low, I have to eat. This can be awkward, especially if I’m in an area that you’re not supposed to eat, or if someone I’m with is hungry. I’ve also gotten plenty of side-eye looks from people as I test my blood sugar or take my shot. Whenever I go to a concert, they have to check my medical supplies. At the theaters, I don’t even bother trying to explain and just sneak my own snacks in. Diabetes has been a chronic interruption in my life. Several times a day it made me stop what I was doing to check my blood sugar or take a shot. It also made me question my worth and made me feel like a failure whenever I didn’t have my numbers under control, which was almost all the time. It was my ‘curse’.

Gastroparesis is new, so I’m still getting the hang of it. I had been sick for months before they finally diagnosed me. Gastroparesis is when the stomach doesn’t digest or empty the way it should. Being unable to eat for so long made me extremely underweight and exhausted all the time. I felt so ugly from the weight loss. I have to read food labels carefully and be hyper conscious of the fat and fiber content. I have to decide if it’s too acidic or if it’s just bland enough, and if it has enough calories to make it worth eating. It has made me scared to go out with friends in case I feel sick. It has disrupted almost every part of my life.

Since I’ve been diagnosed with gastroparesis this past semester, my life has turned upside down. I have always been an A’s and B’s student, but I no longer felt in control, and the depression and anxiety I got from feeling sick caused me to fall way behind in classes. This was supposed to be my last semester before I got my associate’s degree. I ended up dropping one of my two classes. My parents had to reassure me that everyone drops a class at some point, and it doesn’t mean I’m failing as a person. Now I have one more semester to do at GRCC, and I think I’m okay with that. 

So, I suppose I owe GRCC again, for helping me slowly accept and adapt and still feel normal with this new diagnosis. I never really noticed until now, but GRCC has played a major role for me in accepting who I am with all my disabilities. Going here has taught me about a lot of different things, but I never would have thought I’d be one of them.

Cassandra Tiensivu, 42, Comstock Park

Living with ADHD can be quite difficult at times. One of our symptoms is Executive Dysfunction. To an outsider, this looks like problems organizing school work, emotions that appear over the top at times, trouble maintaining a proper schedule, and issues following through with simple tasks. 

There is a sense of shame that can come along with this condition. You know you need to get certain things done, and you completely plan on doing them. But then, it utterly slips your mind. And before you know it, members of your household are upset with you for not doing your share of the workload once again.

For the most part, I haven’t had too difficult a time with my classes here at GRCC. I’m registered with disability services and have not needed to use them for anything up until this last semester. It turns out that science classes are a lot more intense than others. I finally took advantage of the peer note taking , which has been helpful. My excessive talking (also a symptom of my ADHD) sometimes comes in handy when other students are reluctant to begin after lecture discussions. 

ADHD can be lonely. We often talk about ourselves to try and relate to those around us through shared experiences, whereas others often interpret this as us grandstanding or trying to steal the spotlight. In reality, it’s just a different form of communication. We’re trying to express that we can understand how you feel because we’ve been in similar (though not always identical) situations. 

Anonymous

I have bipolar disorder along with a few smaller disorders, and I’m dyslexic, and (have) a speech impediment. It’s hard to go through the mood shifts, I find myself having a hard time trusting myself. Emotions are hard and I have to hide my disorder just in case. Since it’s a mental disorder some people definitely have prejudice towards people who have them. 

I am very lucky to have found a girlfriend that loves me, but dating is difficult. I can be irrational sometimes through my mood swings, and at the beginning of any relationship you wonder if you can tell them about your disorder. 

For me it was getting the right medications, it took so long. Some of the meds I went on made me feel worse, one medication made it impossible for me to concentrate, I have (gone to see) two doctors, both were terribly rude, they got mad at me for telling them the medications were not working, other patients had similar issues with them. It took me a year to get on medication that got rid of my depressed episodes.

I really wish free health existed for all disabled people so I would never have to worry about getting my medications 

(Dealing with this at school has been) hard, GRCC does have good outreach, through DSS the people there are great, the teachers not so much, not everyone, just a few are bad apples, but DSS (Disability Support Services) supports you if you have problems so I am very grateful for them. 

It took me a year to get on the right medications, then about another six months to rebuild my life. I went to school through this time mostly and I’m glad I did, being able to go to school through it was the only thing I did during that time. It felt good to make progress in school even as I struggled. 

I am very happy now, I think the main thing everyone with a disability needs to hear is that they can get through it. You hear it a lot, but mostly from people without disabilities. So as (someone) with one, please try as hard as you can to do it. I never thought I would be able to, I am now so fortunate and happy, I know you can get through this and please keep trying

Isaac D., 28 years old

I have autism comorbid bipolar disorder. It’s just a fancy way of saying I’ve got ” Neurodevelopmental Disorders” according to the DSM-5 (The Diagnostic and Statistical Manual of Mental Disorders). All it really means is I have more choices for the pills I pop every morning, and since it’s so niche there’s less research on the right pills.

Well, It’s chronic. Like most neurodiverse people, I don’t “experience it” every day. I manage it, reduce the triggers, and care for myself in the best ways that I can. I take my medicine, stick to a routine, make sure I have quiet brain time (meditation or reading a book), and ensure I get plenty of physical exercise. On the days when I can’t fully manage it, then I experience it. My mind feels hyper like it’s running from thought to thought. It will slowly drift more towards situations of grandeur in ways that cover my insecurities. If I wasn’t as intelligent as I am, or with the amount of counseling I’ve had, I might even believe them. Yet there was a time before all of this, when I didn’t have my routine. I didn’t have the counseling experiences. I didn’t have my meds, the knowledge to get the meds, or even what mental illness I had. I’ve had over eight diagnoses. They’d put me on meds for one of those eight, that I didn’t have, and I’d act in a whole new way. Plus, I had bipolar and autism. It felt like I was constantly putting on one mask and taking off the next, or sometimes wearing two or three at once. I’d be a smart, polite, charming teen one day/week and the next I’d be sociopathic. If (this) all sounds confusing, and extremely overwhelming you’re right. Now consider the fact that it started when I was 12. I’ve grown and become something amazing but the path to this has caused… well it’s caused a lot. Good, evil, joy, love, and despair in the most personified sense of those words.

It has been a challenge at times when things get more complicated mentally, but at the same time, it’s made college so much easier. I can think unrealistically fast and spew out a 500-page essay in less than twenty minutes (fact-checked). That’s from my mania. I can separate my emotions from the logical side of my brain, and boredom is an emotion. That’s my autism. This neurodivergence that I have has caused me to live differently than other people, but that is true of all differences. My difference needs meds and I will manage it for the rest of my life. It is part of who I am as a person, and it completes me in amazing ways. Yes, it’s chronic and sometimes it acts up really badly, but on the other days it pays itself off and then some.

On the bad days, I struggle to get out of bed or do anything at all. I have to force myself (with lies born of mania) to contact my professors and let them know that “I’m not doing good, and stuff’s going to be late.” Whilst I have to tell my teachers about this, all I actually do is email the disability office and all my teachers. They all do the best they can to keep me from falling (only in relation to my “disability”) because each of them knows that I am doing the best I can. 

Don’t call it a disability for me. It’s a divergence. A neurodivergence. I don’t care if it’s said that I am autistic, I am bipolar, or that I am autistic comorbid bipolar as I am each of those. I and every other “disabled” person are just divergent from the norm but we are not at a disadvantage. Yes, we are all limited in certain areas that are applicable to our divergence, but that is true of being anything in the world that makes you different. With all unfair things, people should receive accommodation for an even playing field. That doesn’t change that there is not one of your so-called disabilities that do not grant additional abilities in other areas. Google “how do dyslexic people think” and tell me what you think is more amazing, the results, or that they mix up their p’s and b’s?

James Herold, 22, East Grand Rapids

I have Asperger’s Syndrome, a mild, high-functioning form of autism. It’s been hard to be a conversation starter. I don’t consider myself a shy person but I sometimes feel like I have no interest in talking to people unless they are friends with me and are nice to me. I have been picked on in school but since then, with my journalism class at GRCC and my job at Flo’s Pizzeria Ristorante Sports Bar in Belmont, I have found caring friends who don’t care how shy or weird I am.

It can be difficult making friends, having a romantic relationship, which in my preference is dating women. Feeling awkward around people as they taunt your religious and political views, which is normal, but I take it a lot more aggressively. 

(The) class load (can be hard), especially not yet passing a math class despite being at the halfway point with credits is tough. Yet, I’m doing well in a journalism class as a reporter for the Collegiate with professor Jennifer Ackerman-Haywood. I have made many kind friends, written a lot of stories with the help of our editors. Most recent story was the Patrick Lyoya police shooting protest where I interviewed the leader of the Royal Black Panther Party.

I have dreams of going to Grand Valley State University to become a broadcast journalist. I’m planning to get an associate’s degree and transfer there after I’m complete at GRCC. 

Avery G., 26, Grand Rapids

My doctors diagnosed me with manic depression, generalized anxiety, and borderline personality disorder. It makes it hard to get out of the house. All you want to do is stay home in bed. You have trouble motivating or having energy for small tasks like showering. 

GRCC has been a challenge. I usually miss deadlines by 24 hours or so. I have trouble getting the energy to go to class. I also have a lot of trouble focusing on lectures. But things should get better. I’m finally getting accommodations which will allow me extra testing time and the ability to voice record lectures. 

Kendra Landback, 19, Cedar Springs

My name is Kendra Landback and I have an autoimmune disease called ankylosing spondylitis. I was diagnosed last September, and my life has changed a lot since then. Over the past few months, it’s gotten hard to move without some kind of mobility aid and I’m on immunosuppressants to help to stop the progression of this disease. It’s gotten to the point where I use a cane pretty much daily and I wear knee braces when I know I’ll be on my feet for more than an hour at a time. I had to quit my job two months ago because I would wake up in too much pain to go into work too often. 

Besides the physical problems this has brought, it’s also been mentally draining. It can feel embarrassing to be out in public, walking with a cane at age 19, trying to get a handicap tag for my car, wondering if I’ll ever be able to hold a steady job, knowing that this is a chronic illness. It’s hard to make plans with people because I don’t know if I’ll be feeling okay enough to do certain activities.

At first, this was relatively easy to manage while taking my classes here at GRCC. My class load wasn’t too much for me to handle physically, and I was managing just fine. However, over the past two months, the pain has been getting worse and I’ve had to miss quite a bit of class. Thankfully, my professors have been very understanding.

I hope to bring awareness to ankylosing spondylitis as it is a rare, yet severe disease. 0.1 – 0.8% of the world’s population suffers with this condition, and if left untreated, can cause the entire spine to fuse, can increase the risk of spinal fractures, cause total joint destruction, and can come with many other issues with inflammation in the entire body. 

Izzy Viola, 18, Ada 

I have ADHD, dyslexia, dyscalculia, dysgraphia, and severe anxiety. 

I have had a lot of teachers say that they don’t understand or believe me. Focusing on something for a long period of time (can be difficult, along with) and test anxiety and not doing a lot of presenting.

Anonymous

I am diagnosed with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Living with both of these disorders is certainly unique, I gain a different perspective and appreciation than my peers. There is beauty and wonder in attention to detail and hypersensitivity, yet this same attention to detail holds me back from completing tasks and being in overwhelming environments. Going through GRCC with my disability has its ups and downs. I’ve met wonderful, accommodating and understanding teachers, but I’ve also met teachers who don’t quite understand my experiences. Assignments are often difficult to complete and I am easily overwhelmed, but I push through it. School has always been difficult for me and that isn’t going to change any time soon, so I need to learn to adapt to any form my education may take.

Anonymous

Buckle up, I’m about to give you a story that you didn’t ask for.

While I have been signed up for DSS since I started college (initially) in 2007, I never utilized it until this year. I was too proud. I thought, “the real world doesn’t give ADHD  accommodations, and if I can’t make it through school, then what chance do I have in the real world?” I got my first associate’s degree at GRCC secretly taking medication I shouldn’t (unofficially, it was hydrocodone) so I wouldn’t panic during tests. My mind would shut down during tests, my blood pressure would skyrocket, my thoughts would be replaced with down spiralling terror and I would burst into tears at the slightest trigger. You can’t hide this emotional dysregulation, so I became known as the crying girl in class. 

But I also really want to become a (dental) hygienist. (So) I decided to go back to school. I decided to finally use the DSS services. 

I don’t have to take drugs anymore to take a test. I cannot understate how much of a game changer it is to be able to talk to myself.

School is still hard, don’t get me wrong. And I’m good at being a dental assistant. People don’t know I have ADHD until they see my locker that has every paper my job ever gave me in it, just shoved in there with no organization or meaning. 

Having a private room has allowed me to keep some dignity, because it is embarrassing to cry in front of your peers. It has allowed me to not use medication that wasn’t prescribed to me in a desperate attempt to control my emotions. It allows me to use the coping skills I learned in therapy, because I can give myself pep talks to literally interrupt my downward spiraling thoughts. I struggled for years needlessly because I wouldn’t accept help. But this private testing room has improved my life in ways I don’t think people can appreciate unless they are someone who needs a private testing room. 

Anonymous

(I have) PTSD (Post Traumatic Stress Disorder), Major Depressive Disorder, General Anxiety Disorder, Borderline Personality Disorder   

Mental illness is not always visible. For me, it makes it hard to do simple life tasks like getting out of bed in the morning, taking showers, going to work/class, communicating with others, the list goes on. One of the worst parts is wanting to be able to do normal things that you see your friends are able to do so easily, but you can’t. 

It is difficult because a lot of people do not empathize with you. Many people are uneducated on how debilitating mental illness can be. They don’t take it seriously until it is too late.

I have found GRCC to be semi helpful with managing my mental illness. I was able to get accommodations and feel like I was heard. But there have been other times that I have reached out and haven’t gotten much response.

Anonymous 

I have an auditory process disorder (APD). I have had this my whole life so the experience can feel draining when writing papers or reading material. It is difficult when reading because I have trouble remembering what I read or when writing a paper, putting things in my own words for it to make sense. It might make sense to me but when others read it, it doesn’t. I have found tutors at the library are very helpful in explaining things to me to where I understand it. I need it broken down into pieces or examples. Visual notes are also helpful.

Sarah Kenny, 27, Grand Rapids

I have Median Arcuate Ligament Syndrome, ADD (Attention Deficit/Hyperactivity Disorder) , PTSD (Post Traumatic Stress Disorder). Other disorders developed during/after having MALS such as chronic migraines with aura, shingles, and nerve pain. 

I was diagnosed with MALS in 2017, I had a 70% compression of my celiac artery. By the time I had surgery, the artery was 98% compressed. I had open abdominal surgery for Median Arcuate Ligament Syndrome (MALS) at the University of Michigan in 2018. Before surgery, I couldn’t eat and was hospitalized for sepsis and severe malnutrition, I lost over 20lbs and only weighed 98 lbs. Having MALS was very difficult because many doctors would not take on my case due to being high risk. At this time, my insurance company didn’t view MALS as a true disorder that caused symptoms and the National Organization for Rare Disorders didn’t recognize MALS as a rare disorder until January 2019. Due to this I had to pay out of pocket for nerve blocks and arteriograms and go through procedures without anesthesia to be able to prove that my condition was severe enough to require surgery. 

Since I had open surgery, most of my symptoms have resolved but I have experienced recurring shingles when I get extremely stressed and I have debilitating migraines that last three to seven days that occur monthly. 

However, my experience with these disorders have been a reminder of what I’ve survived and have become my motivation to find ways of doing things differently so that I can continue to pursue my degree without struggling so much. 

It can be difficult when you realize all the things that you can’t do or won’t be able to do because of your restrictions. It can also cause you to feel like you are a burden to others or like you don’t fit in at times.

My experience living with these disorders has been an on-going struggle that can leave me feeling exhausted and frustrated, especially when it prevents me from sleeping, causes multiple days of pain, or forces me to stop pursuing things I am passionate about. When I was diagnosed with MALS, I could no longer eat without pain and would suffer from 14-day long migraines. I struggled with depression for many years because I couldn’t eat, I had severe brain fog, and pain prevented me from sleeping. There were many activities that I was forced to give up because the pain and exhaustion was too much and some of these activities I still can’t do. 

Going through the past three years at GRCC has been difficult at times, especially toward the end of the semesters. I suffer with chronic pain and every semester I can count on that I will end up with shingles. The ability to take classes online has been both a blessing and a curse. On one hand it has allowed me more flexibility in my schedule so if I have a horrible migraine, I can find a day in my schedule that I can rest my eyes from the screens. However, sitting for so many hours at a computer is one of the worst things someone with a history of vascular disorders could do, so I have learned to integrate more breaks rather than powering through hours of studying. Also, as a student who has a disability, I’ve learned to try to finish my assignments one to three days earlier than their deadlines so that in the case I end up hospitalized or ill, I won’t need to worry about asking for an extension or have the added stress of an impending deadline.

I didn’t contact Disability Services until Lina Blair suggested I do so in Fall of 2020 after I ended up in the ER unexpectedly. I had avoided Disability Services because I worried that if others knew of my health issues that it would prevent me from participating in certain opportunities or that I would be treated differently. I think everyone who is struggling with a chronic disorder or disability should reach out to Disability Services because it eases your stress when something unexpected happens and you need your professors to know about it quickly. The professors I have had at GRCC have been very understanding and supportive; I am very grateful for our professors and Yolanda at Disability Services for helping me navigate during difficult times where I’ve needed to take care of my health.

Median Arcuate Ligament Syndromes (MALS) is a rare disorder associated with chronic, recurrent abdominal pain caused by compression of the celiac artery. Many individuals struggle to receive a diagnosis and may face months or years of medical tests and nerve blocks before insurances cover the cost of surgery. All the while struggling to be able to eat and continue to lose weight, many individuals end up receiving supplemental nutrition through a PICC line which puts them at-risk for sepsis.

If you would like to learn more about MALS, please visit the MALS Foundation.

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