Jesse is a patient advocate for rare diseases, living in the California Bay Area. He is president and co-founder of the HemoAwareness Project and creator of Next Level Advocacy. Classically trained in psychology, Jesse emphasizes on the patient experience as a way to empower others to be their own advocates.
After watching Five Feet Apart I have some things that resonate so deeply with me.
I’ve yet to see people around me with chronic illnesses dive into the guilt and pain that comes with dating and trying to find love.
I am constantly finding myself thinking that no one could love a body so broken. No one could love someone so physically complex.
And the only people who understand what you go through are people who are also chronically ill. But how do you build a life with someone who is also sick? How do you take care of each other when you can hardly take care of yourself? When you both can’t work or can’t drive or can’t make a living, how do you survive with that relationship?
So I look for people who are able bodied and healthy, but they never really get what it’s like. It makes me feel so alone sometimes. How can I expect someone to love me like this? How can I place my burden upon them and be okay with that? How can I I place my medical bills, my appointments, my treatments, my pain, my lack of energy, my scars, my bruises, my wounds, my guilt, my mental breakdowns, my anxieties, my struggles and so much more on top of them? How do you share that with someone?! How do you live with putting your illnesses on top of someone else?
How can you expect someone not to walk away from that? It’s so much to handle most days I wonder how u handle it myself. And I remember it’s because I don’t have a choice.
I know there is someone out there, but until I meet them, how do I cope with that? A relationship with me is 20 times harder because of my health. It takes patience that even I don’t have most days.
Literally how can you expect someone to voluntarily watch you suffer. They would feel so helpless and so worried and have no way to help. I feel that way with my friends anyway. I would feel so bad giving that pain to someone else. Even if it was their choice.
How do you love a body that’s broken? How do you let someone love your broken body? How do you both deal with the pain? How do you share your pain? How is it even possible?
Getting a diagnosis for a controversial disorder (not illegitimate, just poorly received) is rough. For me, people’s opinions don’t change what I experience very day. And I know that, in the end, I’ll have these experiences for the rest of my life.
It’s weird, because this disorder is so chagrined and avoided in the Christian community, and I feel like that’s an issue.
That being the case, I’m still super new at living with this disorder. Those that are looking for peace of mind, I hope you find it here, but if not, at least you’ll have some clarity going forward, religion or not.
If you’re not in a place where you can discuss #Religion and your diagnoses (or lack of diagnoses), consider this your #TriggerWarning. I wanna be fair, but I wanna be clear, and this post is all about what I feel about faith and #MentalHealth.
If you know me in person, you know I’m a ‘good guy.’ If you don’t, I’ll just say I’m prone to binge YouTube videos about the Marvel Cinematic Universe, play with my son, dance with my wife at the end of a long day. I work a job, I’m looking for more work, and I’m good at writing (imho). I’m a normal dude.
When I got married, it was a wonderful time in my life. I’d met my soulmate, I’d gotten a job, and school was going well. I loved God. Things were going smoothly.
I remember a few days early in our marriage that I felt immense panic attacks. I’d never suffered from #Anxiety like this before, so I went to a therapist, talked things out, and went on my way, thinking nothing of it.
I was wrapping up my final three semesters of college when I noticed that I was losing chunks of memory during the day. I grew up with one of the most sharp-witted memories you could imagine. Just ask my folks. But as time had gone on, my memory became more and more spotty, and not just the little things. I have a video recording of me doing a comedy routine, having a ball with my church. Or so it appears. I performed the same routine again in front of my high school. But where I appeared confident and funny for my ward and scared during my high school routine, the biggest key indicator to me that something was wrong was, I had NO recollection personally about my church routine or it’s content, and I remembered, in excrutiating detail, when I “performed” in terror in front of my high school, with no recollection of that routine.
It wasn’t just that I’d forgotten. It was because the information wasn’t there, as if I’d never known it at all.
The another indicator that something was wrong was when I went to work one morning. I sat at the computer, began my work on the computer, and the next thing I knew I was standing alone in the breakroom in the dark. Just standing.
I had no memory of the time I’d lost, about 5 minutes. To my knowledge, no one noticed I’d left the work room.
I also had a day where I lost memory and found a note written by someone claiming to be “Michael,” who I later learned was one of my alters. I was so scared I threw the note away, and completely forgot about it. I didn’t know then that I’d actually dissociated when I’d found it, switching out to another identity who’d thrown away the note.
And then when I was at work, my wife found that note. She was scared. I was scared. I’d already reached out to her about trying to get help, but she was as ill-informed as I was. What if it was #Schizophrenia, and not DID? What if it was both?
Within a few days, I scheduled a time to see a psychiatrist. He gave me the runaround, but it was understandable. He works with medicine and pills, not therapy. That’s his job. It’s a frustrating job, for both parties, but one that’s gotta be around, because medicince does help people when taken correctly.
I tried to find another therapist, but couldn’t. I first found the note in January of 2019. After a two month search for answers, I met my counselor. After a single interview with him, he gave me my diagnosis: #DissociativeIdentityDisorder. It was March 5th, 2019. “DID Awareness Day,” also known as “System Pride Day.” Ironic. What was there to be proud of?
But since then, I’ve done some thinking. Throughout my life, I suppressed my alters, fearing they were just temptations or evil spirits or “fill in the blank” or whatever. I was listening to my fears rather than listening to my faith in God to help me understand what was going on. I lost focus, and became more agitated. Anyone, religion or not, can benefit from keeping your focus on learning the truth of your mental health.
For those that get triggered about religion, even without a diagnosis of mental illness, this is your cue to go. Skip to the section after the line of *******’s.
One night I prayed to ask God if he would still love me if I had this horrible, devastating disorder. All the movies, the books about these characters who could become superhuman were depicted as so evil. DID had become a trope in my mind as much as it was in Hollywood.
My answer was clear. I heard the words, “What does any of that matter if I still love YOU?” The implication wasn’t just the part of me that associates with my given name. It meant EVERY part, every fractured, split-off part of my identity that had been living in hiding and suppression for the better part of my life.
I had suppressed my alters out of fear. But suppressing an alter in DID is like suppressing a song you can’t get out of your head: sometimes it works. Othertimes, it gets louder.
I have a total of four identities (mine included) that front regularly. I have a grand total of eleven alters (myself included), each designed in some way to help me cope with the challenges of life, emotionally, physically and spiritually. They are helpful, caring, but in their own way.
Not a single one of them is dangerous, paranormal, demonic or evil. Each one was created by my subconscious to protect ME from a certain kind of trauma or challenge I couldn’t deal with. Now that I’m older, and they see that my wellbeing is intrinsically linked to my family, they care for my family too.
I wanna include that, I know that’s hard for some to hear. If those close to me (beyond my immediate family, but certainly them included) knew this had been going on for my entire life, they’d likely be angry that something like this could happen to me. They would be angry FOR me, not AT me, for having passed through such horrors that could cause my tender, young mind to break. And I love them for that.
DID is a disorder that comes about because of repeated trauma before the ages of 7-9, with seeds of it beginning as early as 2 years old. I don’t remember the trauma that got me started on this path, but I do know that I am dealing with a very real disorder now.
In closing I have a few clarifications I’d like to make. Whether or not you know who I am, or are someone close to me, you need to know a few things about a diagnosis of DID.
First and foremost, NO, I don’t have a ‘Beast Personality,” or a pedophiliac personality that preys on unsuspecting girls (looking at you, “Split”).
Secondly, my faith in God is the most grounding thing in my life, allowing me a deeper connection among all of my parts/alters/facets, and a common goal.
Thirdly, I have not yet found an explanation of DID that suited me until I heard the podcast called #TheWeInMe on Anchor.fm. It’s an invaluable resource for those seeking more info about their diagnosis with DID, or even how to support your loved ones with DID. There, the host of the program Erika interviews a friend she’d made on Twitter that describes her own DID as an orchestra with no conductor. The Therapist comes along and teaches them how to play for a moment, each playing their instrument (talent, skill, aptitude, what have you), and for a moment, each of the identities plays together in harmony. It’s a beautiful moment, and inspires the orchestra to try to bring themselves to play together again, and again.
Her dialogue about mental health, but certainly about DID, as been a guiderod for where I’m taking my recovery, therapy, and life.
But don’t misunderstand: my alters, or the alters in another system, will never join into one person again. They can’t. DID doesn’t work that way, and that’s probaby the most difficult thing about this diagnosis. If your brain solidifies your behavior into habit, instinct and identity, DID (a behavior to distance yourself from repeated, severe trauma) will not go away. That means KIDS can recover, and I say that with a BIG FAT IF, because I’m not a medical practitioner… with therapy, perhaps with medicine too, a kid could recover, but I can’t speak to the topic of medicine. I just know that, in my case, I’ve got DID and it’s here to stay.
Of course I haven’t come forward publicly about this diagnosis. Why would I? As a man of faith, I understand that the stigma that currently surrounds this mental illness is dozens more terrifying than the diagnosis itself. But I also know that God loves me, and will no matter how I decide to proceed. And yet, this is so, disgustingly wrong. Why should a person so abused, regardless if it’s me or another system, have to feel like religion (if that religion was not the thing that began their DID, which is completely possible), something so good and uplifiting has become a fetter, a ball and chain around the ankle?
God built us to shine, not to shirk. And those in the faith community that have a need to know that they are not alone, even besides the Redeemer of their choice. They need people in their lives to help them, just as much as they desire God to help them.
To that note, my wife has been my rock, my constant friend. Though some of the identities I have developed don’t mesh well with her, she is wise enough to see the good in each of them. Plus, some of my facets are just plain fun, so there’s no complaining there. My parents, her parents and a very select few others have been nothing but understanding and supportive. I’ve been very blessed.
Getting a diagnosis for a controversial disorder is rough. For me, people’s opinions don’t change what I experience very day. And I know that, in the end, I’ll have these experiences for the rest of my life.
That said, I’m not down. I’m not out. And I’m not unhappy. I’m actually very happy, I’m just learning that I need to take some time and learn how I can create the most fulfilling life for my wife, my son, and myself.
This is the first time I’ve joined an online community like this. I was recently diagnosed with depression, anxiety, mental OCD, and mood disorder. I was genetically predisposed to mental illness, but never believed it would be something I’d truly suffer from. I knew I suffered from anxiety above all else for most of my life, but figured everyone kind of did, but I was wrong.
I recently met one of the most incredible people I’ve ever known. He’s been patient, kind, supportive etc... The other night we had the most amazing date anyone could ask for. When we talked that night after he got home (he lives about an hour away) it turned into a fight about why I didn’t make a move, why I didn’t tell him I wanted him as much as I did etc. He is a very emotionally sensitive guy as I’ve come to know, which is great if you ask me. A man not afraid to express his emotions seems rare these days; however he’s been struggling to understand my emotions on the days they are pretty bad. The other night after our amazing date I tried to explain to him why I didn’t make a move, I was nervous, scared etc...in the end it turned into “I’m done” and I became hysterical. I was crying so hard I began hyperventilating, I was telling him things like I didn’t matter anymore, you don’t need to worry about me, I don’t matter, I don’t care about anything, I’m not going to be ok etc... He became very worried, he did all he could to calm me down as I begged him not to leave and to believe in what we have had since day one! After 40minutes he was able to calm me down (he’s one of the only ppl who’s ever been able to calm me). I was able to breath and rationally speak to him. We went to bed that night with the agreement we would talk calmly in the morning that there was no guarantee things would work out or not work out. We talked that next morning, it was nice, it calmed my soul a bit. We have stayed together, but last night he made a comment and said “part of me wants you and the other part is scared” I asked specifically what was telling him to be scared and he brought up my breakdown. He said the things I said, my inability to calm myself down and breathe scared him and it’s made him scared and unsure.
How do I fix things, how do I assure him I know this won’t happen again, how to I get him to understand my heightened emotions were directly linked to my separation anxiety. He’s been patient through every step of learning to cope with my mental illness, but now I’m terrified I’ve let my emotions go so uncontrollably that I’ve ruined it all and he is the absolute love of my life, I know this without a doubt, with no hesitation at all. He is my person, but I don’t know what to do now ....
Diabetes has such a restrictive eating plan that I have to count carbs obsessively to keep my BS in a healthy range. Unfortunately that is the perfect storm for binging, restricting, count carbs, getting hungry, missing favorite foods, missing out while other people eat and then comes the out of control binge that leave me with sky high BS and horrible, crushing shame. There has to be something better than this... #BingeEatingDisorder#Diabetes
I’m ha hang a procedure later to take out my ear tube and fix my eardrum and I will be asleep but I was finally diagnosed with medical #PTSD and I had horrible nightmare last night and now I’m terrified is there anything any of you who have it do to calm down my therapist has been helping but I don’t feel like I’m ready still. I had ear tubes placed when I was awake and with my other chronic pain problems it was one of the most painful things ever so I’m really nervous but I’m hopeful taking it out will help because it’s been causing me more problems #EustachianTubeDysfunction#ChronicIllness#ChronicPain#ChronicVestibularMigraine
So I struggle with the fact that the reason I will not have kids is that my genes are awful. I don't have a good heart gene to give, so they'd be sick. This decision gets a lot of "Oh you poor thing" Or, "Well you never know what God will do" as a response to my harsh reality and it's something I kind of don't know how to explain. #RareDisease
It's OK If You Don't Want to Share All Your Experiences With Illness
We all have secrets. Little tidbits about our lives, relationships, wants and desires. Some of us keep our personal lives close to our chest. Some share thoughts and feelings with close friends and family. Others share pretty much everything with anyone that will listen. As someone with what could be termed a “chronic illness account” on Instagram and other social media platforms, I have thought a lot about what I will and will not share online about my life. By nature I am an under-sharer, if such a word exists. I keep my personal life to myself for the most part. There are a few selected friends that I go to when I need support or advice, or just a good old rant about whatever is troubling me. There are, however, a few experiences I have kept wholly to myself, the pain being something I am not willing to share. Some of those experiences took place in a hospital consulting room, or during tests when my body was prodded and poked while I swallowed back tears and tried to silence upsetting thoughts. My health issues aren’t a secret as such, but the question of sharing this aspect of my life is complicated. I don’t know a single person in my non-internet life who lives with my chronic conditions, or any similar to them. For this reason, I kept quiet for years, hiding my symptoms as best I could. Feeling embarrassed, ashamed, guilty even that I was “different,” that I had a body that wouldn’t work as I wanted it to. It felt incredibly lonely to live a life without another person truly understanding what I was going through. But then a year or so ago, a whole world opened up to me when I downloaded the Instagram app on my phone. Suddenly I became part of an amazing chronic illness community. There were all these people that “got it.” People who understood the difficulties, limitations and emotional turmoil that chronic illness can bring and supported each other through it. I made friends who I keep in touch with through private, direct messages. I have opened up to them, sharing experiences that I have not told my “in real life” friends. The sense of relief in not feeling so isolated has been life-changing. Yet outside of direct messages, the content of my social media posts has been the subject of much self-reflection. It took me a year to post a picture of myself with my face showing, and I don’t show my family or home. As time has gone on though I have became braver. I worry less about whether my real-life friends or colleagues will somehow find this secret account I have and post, for the most part, what I am going through. I have started to learn how to own my life, all of it, health issues and all. However, that is not to say I share anything and everything on social media. There is a bind here that I negotiate every time I upload a post. On the one hand I value the feeling of being connected to others, and the helpful, inspiring, even funny conversations my posts generate. I also truly believe that raising awareness of chronic illness is profoundly important. If I can help to do that in some tiny way through my social media platforms then I am happy to share some of my health journey. It is without doubt that stigma, taboo and lack of understanding surrounds the world of chronic illness and affects everyone who has it. Invisible illnesses some of my conditions may be, but I hope that one day they won’t be invisible in other people’s minds. It is only by raising awareness that this can happen. But on the other hand, however, should I have to bare all my experiences? Do I have a responsibility to speak of all aspects of living with chronic illness? Am I doing a disservice to the chronic illness community if I choose to keep some things to myself? At the moment my answer is no. I don’t have to share it all, and I don’t have a responsibility to do so. Nobody online, chronic illness or not, is a commodity to be “consumed” in an all-encompassing way by others. Some may disagree with me on this, I know. They may say that “hiding” my experiences plays into the stigma of illness. But my health is mine and belongs only to me, and those I choose to share the details of it with. Sensitive doesn’t begin to describe how I feel about certain aspects of my chronic illness life. It is a life that I didn’t envision when I was growing up in my healthy days and I am still working out how to negotiate its challenges. It is a life that is delicate, personal and profoundly, gut-wrenchingly, upsetting at times. Therefore, it is for me to negotiate with whom I share these emotions and experiences. While I truly admire those that share more then, it is not for me. When it comes to our health all the questions about sharing, in my experience, require a bit more thought. So to each their own, without judgment, is my stance. Because it is not the case that those who choose not to share everything about their health are hiding their “truth.” It is that we are in the process of accepting this truth, dealing with it, negotiating the parameters of its existence in our lives. And that can be aprofoundly personal, and not social, experience.
These days, patients utilize many forms of self-care in order to self-soothe through difficult times. Whether it be an item that comforts them, such as a stuffed animal or music, or a ritual, such as taking a bubble bath or relaxing with aromatherapy, chronic illness patients know how to minimize anxiety and stress. Personally, I go through the same motions when it comes to minimizing my own anxiety surrounding my condition. I have a rare blood disorder, and currently I’m on an aggressive treatment, with some drastic side effects. It’s quite different to know what the side effects or risks of a treatment are, and to experience them firsthand. My go –to stress relievers are researching my condition, hot showers and aromatherapy. Upon my most recent doctor’s appointment, I discovered that I’m showing signs of developing more significant side effects: hearing loss, vision loss, and dramatic weight gain. It’s difficult to be told you’re now a candidate for hearing aids and have sustained a loss in hearing by 30 percent and you’re in your early 30’s. I’m completely beside myself. All the usual methods of self-care do not make me feel any better about this new reality. To see these side effects begin to impact work, relationships, and my own self-image wreaks havoc on my self-esteem. As depression sets in, I fall back on my rare disease friends, who are there for me in a way I couldn’t have foreseen. After having numerous conversations with friends, through words of reassurance, understanding and self-disclosure, I began to feel the troubling, heavy weight of doubt and depression lift from my shoulders. That’s when I had an important realization: my rare community is my self-care. Hearing words of affirmation that I will be able to persevere coming from people who have known me at my best and seen me at my worst health-wise is just the warm comfort that I needed. My “blood sister” as I affectionately call her, a friend who has the same type of disorder as me, reminded me of all the obstacles I’ve overcome and how regardless of any physical changes that may occur, my heart is the same. This technique is something which we (chronic illness patients) can all learn to utilize, preemptively against emotional anxiety related to our condition. The people we surround ourselves with are those who can help us care for ourselves, simply by being supportive. This form of self-care can be used as a way to recharge emotionally when feeling overwhelmed by a flare, illness, or impending operation. I didn’t realize the profound effect surrounding myself with people who understand the unique position of having a chronic illness would have on my mental health and outlook towards my condition. This is one of the hidden secrets you learn as a patient. The people you surround yourself with are the best company to keep when looking to take care of your emotional well-being.
Having a Genetic Condition and the Impact on Family Planning
“Let’s start a family, I’m ready.” Anyone who has ever dreamed of having children longs to hear those words. However, the same words can elicit a sense of uncertainty among those who have been diagnosed with a debilitating genetic condition. 80 percent of rare diseases are genetic in origin, and approximately 50 percent of those affected are children, according to Global Genes . What does one do when faced with the reality that having biological children may result in unimaginable hardship? I was born with a rare and genetic blood disorder. I wasn’t diagnosed until adulthood, but I grew up with the fear that I may pass my condition on to my potential children. I recall arguing with myself and my partner about the implication that I would allow a child to endure the same challenges I did. To put my mind at ease, I sought genetic counseling in order to find out the likelihood of passing on my condition. Fortunately for me, it was revealed there was a 25 percent chance my children would be carriers of my condition. Being a carrier would mean they would have the trait, but it wouldn’t manifest the condition as it has in me. This was an acceptable risk to me, and I let out a great sigh of relief and a lot of tears. But it doesn’t always go that way for others. Kara also has a rare blood disorder, which she wasn’t aware of until she was pregnant with her first son, Brian. At 39 weeks pregnant, Brian stopped moving in the womb and had to be delivered by C-section. Brian had multiple birth complications, and at 3 and a half months old, he was diagnosed with congenital dyserythropoietic anemia type 1. This diagnosis led Kara and her husband to decide to no longer have any more biological children. Instead, they most recently decided adoption is the right choice to grow their family. An unseen conflict can occur internally when someone with a genetic condition hopes to have a family. Even more so, those hopes can be quickly dashed when faced with having children and the journey may be full of challenges and hardships. For Jenna, who has Ehlers-Danlos syndrome (EDS), being pregnant was difficult, debilitating and rendered her permanently disabled. Lizzy, who also has EDS, had children but carries no hope of ever having grandchildren. Her children have sternly decided not to have children, so they could avoid the difficulties they faced growing up. It’s apparent that the lengths to which a person with a genetic condition will go to in order to have a family goes beyond the expectations of someone in picture-perfect health. Claire, who was diagnosed with congenital dyserythropoietic anemia type 2 as a child, underwent an arduous journey in order to create her family as well as safeguard her children from the same condition. She consulted with her obstetrician who suggested she begin a regiment of fertility injections. Three times a day for months in and months out, like clockwork, Claire would administer hormone injections to herself. After over a year’s time, she was able to become pregnant and later gave birth to two healthy twin boys, Wyatt and Leo. Aside for internal conflict over the prospect of having children, those living with genetic disorders are sometimes scrutinized by medical professionals and even family members for wanting to have a family. People call into question a moral obligation to spare the future generation from such challenges. It’s not negligence to want to have children of your own. For many people, it’s a hallmark and highlight of accomplishment. The counterargument for such a claim is that having been born or diagnosed with a genetic condition better equips us to have children, especially if they have the same condition, for having lived with it. It’s obvious that those who are living with a genetic condition have to be more methodical and critical when it comes to family planning. For some, the choice is easy. For others, it may be a daunting challenge that is worth all the time and effort in the end. There are those who will have to give up the hopes of having children of their own, but they’re at peace knowing they have the support of friends and family. In the end, family isn’t always who you are related to by blood, but who relates to your heart. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images
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