Naomi G.

@agirlcallednaomi | contributor
Hi, I'm Naomi and I'm from the UK. I'm a disabled blogger and YouTuber. I'm passionate about disability advocacy and raising awareness. My main disabilities are hEDS, severe M.E, chronic migraines, FND, and PoTS. I also love glitter, rainbows, books and writing letters.
Naomi G.

FOMO: The Feeling Of Missing Out With Myalgic Encephalomyelitis

I don’t use the term “Fear Of Missing Out” because there isn’t any fear that I may miss out; I know that I’m missing out. Hence in my life, FOMO stands for the feeling of missing out. Having chronic health problems, especially having severe myalgic encephalomyelitis, I often feel like I’m missing out. This could be missing out from not having being able to graduate from university, or feeling like I’m missing out on what I see people I know are up to from what they share on Instagram or missing out on family occasions or missing out on the life that I should be living if I hadn’t have become unwell. I’m missing out on so many things: education, employment, socializing with friends, family get-togethers, holidays, going places, and so much more. I’ve never gotten over the Feeling Of Missing Out. It makes me feel like my ill health is winning over on me and that it’s taken so much away from me. Rather than feeling angry like some people may feel for me, I experience a sense of deep-seated sadness for the life I should be living if I hadn’t gotten ill. There are times when I’ve had to miss out on events, some of which I would have loved to be part of, but I know it wouldn’t have been possible for me to join and it would have tipped my fine balancing of energy levels and other symptoms. I have to prioritize so carefully what I can and can’t do and how much I’m able to do. That feeling of missing out makes me feel at times invisible, as if I’m not there. Coincidentally the international campaign on World ME Awareness Day is called the “Millions Missing” — the millions of people worldwide missing from employment, education, society, etc. due to their ME, especially those with severe and very severe ME. I don’t think I’ll ever get over the “Feeling Of Missing Out.” I always wish I could enjoy things and equally not feel the payback and exacerbation of symptoms when I do join in with something. However, I feel like I’ve come to accept those feelings of missing out and times and events that I do want to join, even briefly, I’ve found ways to do so. I plan lots of rest beforehand, I ensure that I manage my energy, and listen to my body when it starts to tell me that it’s had enough or needs a break. And I ensure that there is plenty of time to recover after. I’ve also come in a way to accept my limitations and that feeling of missing out. I know that I can’t do everything so instead of dwelling on what I can’t do and what I’m missing out on I look at what I can do. This has taken me some time to do and there are times still when I do feel sad about certain things I’m missing out on. Life with chronic illnesses isn’t linear; there are times when I feel OK and times when I don’t feel OK, including that feeling of missing out. Sometimes seeing a post on Instagram or something on YouTube or hearing what a friend has been up to can be hard. Even though I’m happy for my friends, I feel like I’m missing out on things I’d love to be able to do. But this is where acceptance comes in, feeling gratitude for what I am able to do within my restrictions rather than regret over what I can’t do and what I’m missing out on. There is this quote that I love: “There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.” This quote helps me and reminds me that I can’t do everything; there are inevitably things that I will miss out on due to the restrictions of my illnesses and disabilities. But equally, this quote reminds me that there are many things I still can do and I try to focus on those things instead.

Naomi G.

What People Need to Understand About Non-Epileptic Seizures

Epileptic seizures are caused by abnormal electrical activity in the brain, but they are not the only cause of seizures. People can experience non-epileptic seizures for a whole host of reasons. Alcohol, low blood sugars or low blood pressure or sleep disorders can all cause non-epileptic seizures. I experience non-epileptic seizures as a symptom of a condition called functional neurological disorder, or FND for short. FND occurs when the brain’s messaging system malfunctions and doesn’t work as it should. As FND affects the whole brain, it can cause many different symptoms, and no two people with FND are the same. Some people may only have one or two symptoms while others may experience a myriad of symptoms. It is often an ever-changing illness. New research has shown FND is caused by a malfunction in the nervous system and it is now being classified as a neurological illness. This is welcome news for most people with FND. I was talking to a friend earlier in the week who also has FND and we shared how much we hated the old terminology of conversion disorder which is classified as a psychiatric disorder. Even here on The Mighty, FND and conversion disorder are lumped together, which I feel needs to be addressed as it undoes all the hard work FND professionals and patients are striving to do to separate the two conditions and raise awareness of the true nature of FND as a neurological illness. This in itself makes it hard for me to say to people that I have FND or that I have non-epileptic seizures because people jump to the idea that “it’s all in my head,” which it is, but as a neurological illness as opposed to being psychiatric in nature. FND non-epileptic seizures are caused by my brain signals going a bit haywire — like when you press the brake pedal in a car and instead the windscreen wipers come on. My seizures have taken many things away from me over the past eight years. I have never been able to learn to drive as I have to be a year seizure-free before I can get behind a wheel. I have had numerous accidents and injuries. When I first started experiencing my non-epileptic seizures, I poured a freshly boiled kettle of water down myself. Another time, I fell backward down a flight of stairs. I am unable to be on my own for very long, and when I leave the house I have to have someone with me for my own safety. People need to understand that non-epileptic seizures can present very differently from person to person. For example, my friend with FND also experiences non-epileptic seizures, but hers are more of a dissociative experience; she can hear and feel the world around her but she feels trapped inside her head. Whereas I am utterly unconscious convulsing on the floor in a “classic” example of a seizure. I also want people to know that we are not faking or feigning our seizures. They are not factitious. They are not there for attention or manipulation. I have had my non-epileptic seizures dismissed as these things by health care professionals, which is very damaging and harmful and downright upsetting. When your symptoms are not believed, or are seen as being the outdated psychosomatic or psychogenic type of non-epileptic seizures derived from conversion disorder, it can be very difficult. I now avoid going to the hospital because of the numerous times I have been accused of attention and drug-seeking, wasting the staff’s time, taking a bed from someone who really needs it, being manipulative and much more. On top of that, I’ve experienced physical damage, being held down or restrained which you should never do to someone having a seizure, epileptic or non-epileptic, or when someone has gripped me so hard to “snap me out of it” that they leave a significant mark. There is no “snapping out” of a seizure. But most of all, people need to know that our symptoms are real. Please believe us, help us and know that just like seizures from epilepsy, we have no control over our non-epileptic seizures.

Naomi G.

My Chronic Fatigue Is Not a 'Gift'

I have severe myalgic encephalopathy (ME), which amongst the many different symptoms I experience with this illness, chronic fatigue plays a predominant part in my day-to-day life. From feeling brain fogged due to fatigue, through to the flu-like malaise and lethargy many people with ME experience. ME is often brushed aside as a chronic fatigue condition, but it is, in fact a neuroimmune condition. Sometimes, people see my chronic fatigue as a “gift,” as my fatigue is so severe I am unable to work, be in education or even volunteer. Most of the time, I have to lie reclined to ease my symptoms, often in the darkness and the quiet. Due to the severity of my ME, I am housebound (and sometimes bedbound). Some people see being able to stay in all day as a “gift” and that I can leisurely spend my day doing whatever I want with no constraints. But, to me, this is far from the truth. Instead, I would say my fatigue and ME symptoms are more in charge of me than I am of them. As a result, my days are not spent at my own leisure, but more just trying to stay afloat until bedtime when I can crash into bed. I would give anything to be able to return to education and my volunteer work, building up to a point where once I’m finished with academia, I can start work in my longed-for job as a child psychotherapist. Unfortunately, I have no idea when that day will come, or even if it will come, which brings a deep sadness. I grieve for my old life, even after all these years of living with ME. There are so many things I miss, and most are not big things, but trivial things like ballet, yoga, going for coffee with friends, sitting in an interesting lecture or kicking about in the fallen autumn leaves. Chronic fatigue is not a gift. Some people think chronic fatigue is just about feeling tired a lot, but it’s much more complicated than that. Fatigue clouds your brain so you can’t think straight and you become easily forgetful and get frustrated with yourself over minor things. Your body becomes tired that at times you feel like dead weight, and even lifting your head to sip a drink through a straw is a challenge. Yes, you do feel tired a lot, but it’s a helpless tiredness as sleep often doesn’t make it better and, in my experience, you wake up feeling more tired than how you felt when you went to bed. I wouldn’t wish my chronic fatigue on anyone. It’s not a novelty and there are not perks or days spent leisurely doing as I please because my fatigue is far from being a “gift.” I wish people understood the real constraints of having chronic fatigue.

Naomi G.

I Am Not 'Wheelchair-Bound'

I’m an ambulatory wheelchair user. I am not “wheelchair-bound,” and many people who are wheelchair users, whether it be their permanent aid to getting around or occasional form of transportation, detest the term “wheelchair-bound.” We are wheelchair users. The term “wheelchair-bound” brings illustrations to my mind of being tied up in a wheelchair, and it sounds so restrictive, when in fact, I have found freedom, positivity, lightness, ease, safety and independence through using my wheelchair. Walking is what’s restrictive for me, as although I can walk, I can only do so for a very short, awkward, wobbly distance. I can’t fall or faint when I am in my wheelchair; it keeps me safe. I can manage to do so much more with the aid of my wheelchair; without it, I wouldn’t be able to leave the house. Often when I’m out and about in my wheelchair, people assume and occasionally ask me what is wrong with my legs, trying to ascertain why a seemingly healthy young woman is in a wheelchair. Added to that, being an ambulatory wheelchair user, often people don’t understand why someone can get out of a car and then make a few assisted steps towards their wheelchair before sitting down. Thankfully, I’ve never faced the hurtful accusations that some ambulatory wheelchair users I know have faced. There definitely needs to be more awareness around why someone may use a wheelchair and the diversity of those who use wheelchairs, including ambulatory wheelchair users. I feel that television is largely to blame for the stereotyping of wheelchair users. Often, characters have a spinal cord injury or are war veterans who came into contact with an IED, and often the character views their wheelchair in a negative light. In reality, however, many of my friends and I feel the total opposite about our wheelchairs; we love our wheelchairs and we love customizing them and claiming them as part of us. We are proud of and thankful for our wheelchairs. “Wheelchair-bound” is quite an ableist term. As a wheelchair user, I am more restricted by an ableist society than my wheelchair because the world isn’t built for wheelchair users. If ableism and inaccessibility didn’t exist, the term “wheelchair-bound” may never have existed. We need more diversity in television and advertising, including ambulatory wheelchair users. We need more disabled people playing disabled roles or as presenters on television programs — not just sidelined to present events such as the Paralympics, but on mainstream shows. We also need diverse disabled models in the fashion industry and in advertising, including ambulatory wheelchair users. As wheelchair users, I believe we need to share the many reasons why someone may need to use a wheelchair to break down the stereotypes that have been built up over the years. We also need to show people how proud we are to be wheelchair users and that we are not bound by our wheelchairs — they give us freedom and independence to live our lives.

Naomi G.

Coping With Incontinence Due to Ehlers-Danlos Syndrome (hEDS)

I have a condition called hypermobile Ehlers-Danlos syndrome, or hEDS for short. It’s a hereditary connective tissue disorder which basically means that the collagen in my body is faulty. Collagen acts as a bit like glue in the body, holding all the organs and joints and bits in between together. So as you can imagine when the glue in my body is faulty, everything falls apart, quite literally. My joints regularly sublux (partially dislocate) or dislocate which is painful but I’ve learned to self-manage, and going to A&E (aka the ER) the vast majority of the time isn’t necessary, as painful as my dislocations can be. Along with my joint problems, the faulty collagen means that my organs are too stretchy. The main organs affected in my body include my heart — and secondary to that I have developed a condition called PoTS, postural orthostatic tachycardia syndrome. I also have intestinal dysmotility, which means that my gastrointestinal system works on the go-slow. But the part of my hEDS that is really hard to talk about is how my bladder is affected. I’m now 27 and for several years now I have had to live with incontinence. Due to another neurological illness, I don’t sense when my bladder is full, which leads to urine retention. Then, because of my faulty collagen as a result of my hEDS, my bladder will stretch beyond normal capacity until it is too full and I become incontinent. Also because of my faulty collagen, my urinary system doesn’t “hold it in,” so I can leak. At 27, I have to wear incontinence pads. Going out is a bit of an ordeal as I have to ensure that I’m covered for all eventualities, including packing a change of clothes, pads, wash wipes, nappy bags etc. I feel too young to be dealing with these things, and using pads has just been putting a band-aid on the problem. But I’m now under a new urology team with a consultant and specialist nurses and we’re exploring ways to improve my life including the option of having surgery to insert a suprapubic catheter (SPC). Other non-surgical catheters are not suitable for me, so I’m just hoping that can be given the go-ahead as it would really improve my quality of life. I have found comfort in talking to a couple of other people around my own age with HSD (hypermobility spectrum disorder) and hEDS (both conditions are pretty much the same) who have to deal with incontinence too as part of their HSD/hEDS. Together we have shared our journey of living with HSD/hEDS and how our urinary problems started to how things are now and how they manage their incontinence. They’ve shared with me their use of different types of catheters and how it feels to use them and the improvement they have brought, but also the challenges of having catheters and urinary problems and having HSD/hEDS in general. It’s helped me to feel that I’m not alone in having to deal with such embarrassing and hard-to-talk-about problems at a young age. And equally, they have found it helpful to talk about urinary and incontinence problems as they also felt embarrassed and alone like I did. No one chooses their disability or chronic illness and the symptoms that come along with their disability/chronic illness. Some symptoms can be really easy to talk about, while others can be really hard to talk about. It’s taken me a lot of courage to write this post, but I want to share that there is no shame in embarrassing symptoms. It really can help to reach out and talk to others who are experiencing similar problems. So often the things we find hard to talk about make us feel like we’re the only ones — but you’ll soon find that you’re not.

Naomi G.

Coping With Incontinence Due to Ehlers-Danlos Syndrome (hEDS)

I have a condition called hypermobile Ehlers-Danlos syndrome, or hEDS for short. It’s a hereditary connective tissue disorder which basically means that the collagen in my body is faulty. Collagen acts as a bit like glue in the body, holding all the organs and joints and bits in between together. So as you can imagine when the glue in my body is faulty, everything falls apart, quite literally. My joints regularly sublux (partially dislocate) or dislocate which is painful but I’ve learned to self-manage, and going to A&E (aka the ER) the vast majority of the time isn’t necessary, as painful as my dislocations can be. Along with my joint problems, the faulty collagen means that my organs are too stretchy. The main organs affected in my body include my heart — and secondary to that I have developed a condition called PoTS, postural orthostatic tachycardia syndrome. I also have intestinal dysmotility, which means that my gastrointestinal system works on the go-slow. But the part of my hEDS that is really hard to talk about is how my bladder is affected. I’m now 27 and for several years now I have had to live with incontinence. Due to another neurological illness, I don’t sense when my bladder is full, which leads to urine retention. Then, because of my faulty collagen as a result of my hEDS, my bladder will stretch beyond normal capacity until it is too full and I become incontinent. Also because of my faulty collagen, my urinary system doesn’t “hold it in,” so I can leak. At 27, I have to wear incontinence pads. Going out is a bit of an ordeal as I have to ensure that I’m covered for all eventualities, including packing a change of clothes, pads, wash wipes, nappy bags etc. I feel too young to be dealing with these things, and using pads has just been putting a band-aid on the problem. But I’m now under a new urology team with a consultant and specialist nurses and we’re exploring ways to improve my life including the option of having surgery to insert a suprapubic catheter (SPC). Other non-surgical catheters are not suitable for me, so I’m just hoping that can be given the go-ahead as it would really improve my quality of life. I have found comfort in talking to a couple of other people around my own age with HSD (hypermobility spectrum disorder) and hEDS (both conditions are pretty much the same) who have to deal with incontinence too as part of their HSD/hEDS. Together we have shared our journey of living with HSD/hEDS and how our urinary problems started to how things are now and how they manage their incontinence. They’ve shared with me their use of different types of catheters and how it feels to use them and the improvement they have brought, but also the challenges of having catheters and urinary problems and having HSD/hEDS in general. It’s helped me to feel that I’m not alone in having to deal with such embarrassing and hard-to-talk-about problems at a young age. And equally, they have found it helpful to talk about urinary and incontinence problems as they also felt embarrassed and alone like I did. No one chooses their disability or chronic illness and the symptoms that come along with their disability/chronic illness. Some symptoms can be really easy to talk about, while others can be really hard to talk about. It’s taken me a lot of courage to write this post, but I want to share that there is no shame in embarrassing symptoms. It really can help to reach out and talk to others who are experiencing similar problems. So often the things we find hard to talk about make us feel like we’re the only ones — but you’ll soon find that you’re not.

LilyAn
LilyAn @meganlilyan
contributor

Dating and Marriage With Hemiplegic Migraine

Every day of the last 15 years with Philip has been easy, but the last 15 years of my life have not always been. My husband always knew I had a migraine disability severe enough to keep me out of high school. However, when we started dating he didn’t know any more than that. On one of our first “official” dates, the aura hit. I barely was able to tell him I needed him to take me home. He thought, “maybe she would like to go somewhere beautiful instead” and took me to a secluded public park. Once I started throwing up, he thought better of his decision and redeemed himself. He learned the hard way how serious hemiplegic migraine can be. He was the first, and still the only person in my life to ever see me through an entire attack from start to finish. He brought me home, called my parents, obeyed their every command to the letter from stapling up the vinyl blackout curtain so not a single sliver of light broke through, to holding my hair back. He laid beside me, motionless, in the pitch black for eight hours. He didn’t speak. Most medical staff ask a thousand questions, and this guy, the guy who finished his pre-med and linguistics degree in two and a half years, didn’t do anything but wait while literally holding my hand. I guess all I can say is, sometimes we don’t get to choose when our biggest weaknesses are revealed, but no matter when, or how, or why, the right person is always ready, and is always worth the risk. My life with HM has only worsened. Recently, I asked Philip if he had known how bad it would get, would he still have chosen me? Without hesitation, he responded, “I didn’t just choose you once. I choose you every day. Migraine is part of what made you who you are, and even though I hate how much pain you are in, I hate even more that I can’t do anything to help you.” Little do our loved ones know how much they keep our hearts beating. So many people talk about a love they would die for, but hardly ever do we discuss the loves for which we stay alive.

Naomi G.

Why I Don't Call Myself a Chronic Illness 'Warrior'

I just want to say before I continue with this story, I’m not against people referring to themselves as “chronic illness warriors” or describing their “fight” with their illness. It’s just that this language doesn’t work for me. Here’s why. The words “fighter” and “warrior” are often linked with our response to illness. Even when someone has something like a simple cold, they may say, “I’m fighting a cold!” This makes it sound like we’re in a war zone with our bodies and sheer willpower will get us through the day. I’m chronically ill, but I don’t think that makes me a “warrior” or “inspirational.” I’m just Naomi and I just happen to be disabled and living with a set of chronic illnesses and symptoms. Yes, life on a day-to-day basis is a struggle. It takes a lot of effort to do everyday tasks and I require help with things. But on my bad days when I can’t get out of bed, it’s not because I haven’t tried hard enough or “lost the battle.” I’m simply not well enough to get out of bed. When it comes to chronic illness, there isn’t an “after” or “when I’m well again.” It’s a journey of grief, acceptance and coming to terms with the life I have now, and learning to go with the ups and downs of good days and bad days and in-between days. I am trying to let go of the life I had planned out, especially when it comes to my education and the career I’d always wanted (and I still hold out on the hope that one day I can return to it). Some days the grief for that lost life I planned is still very raw. When I first got ill, I did feel like I was fighting against my symptoms, which at the time were “medically unexplained.” I was hoping they would just be temporary, but eventually, I had to accept my reality. When I was fighting against my body, I was just stressing it further and probably making myself more ill in the process. Accepting my disabilities has been hard, and it took a while for me to refer to and see myself as “disabled.” Many times I haven’t wanted to accept the fact that I will be ill for the rest of my life to one degree or another, and sometimes I find myself hating my illnesses or feeling like my body is “broken.” Of course, it was and still is really difficult, especially when I still feel so young to be dealing with being chronically ill and seeing my life and future turned upside down by something I never planned for or chose. It’s especially hard seeing people my own age, like my brother, doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find friends around my own age to talk to about being young and disabled in a healthy and supportive way. To me, the word “fighting” sounds exhausting. Sometimes you just want to take off your armor and talk about how hard it is and how it sucks. When this happens, I don’t want to be told I’m inspirational and to “just keep going!” or “battle on!” I just want someone to listen. This is where I’ve found therapy or talking to friends with disabilities helps. One of my friends shared this quote: “Just keep swimming, and when you can’t swim, just float.” Sometimes I just want or need to float for a while. I’m not totally against the use of terms like “warrior” and “fighter” and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems — like the community here on The Mighty. Giving up the fight helped me accept that I was chronically ill as opposed to continuing a battle I was never going to win. It was the right choice for me.

Naomi G.

Why I Don't Call Myself a Chronic Illness 'Warrior'

I just want to say before I continue with this story, I’m not against people referring to themselves as “chronic illness warriors” or describing their “fight” with their illness. It’s just that this language doesn’t work for me. Here’s why. The words “fighter” and “warrior” are often linked with our response to illness. Even when someone has something like a simple cold, they may say, “I’m fighting a cold!” This makes it sound like we’re in a war zone with our bodies and sheer willpower will get us through the day. I’m chronically ill, but I don’t think that makes me a “warrior” or “inspirational.” I’m just Naomi and I just happen to be disabled and living with a set of chronic illnesses and symptoms. Yes, life on a day-to-day basis is a struggle. It takes a lot of effort to do everyday tasks and I require help with things. But on my bad days when I can’t get out of bed, it’s not because I haven’t tried hard enough or “lost the battle.” I’m simply not well enough to get out of bed. When it comes to chronic illness, there isn’t an “after” or “when I’m well again.” It’s a journey of grief, acceptance and coming to terms with the life I have now, and learning to go with the ups and downs of good days and bad days and in-between days. I am trying to let go of the life I had planned out, especially when it comes to my education and the career I’d always wanted (and I still hold out on the hope that one day I can return to it). Some days the grief for that lost life I planned is still very raw. When I first got ill, I did feel like I was fighting against my symptoms, which at the time were “medically unexplained.” I was hoping they would just be temporary, but eventually, I had to accept my reality. When I was fighting against my body, I was just stressing it further and probably making myself more ill in the process. Accepting my disabilities has been hard, and it took a while for me to refer to and see myself as “disabled.” Many times I haven’t wanted to accept the fact that I will be ill for the rest of my life to one degree or another, and sometimes I find myself hating my illnesses or feeling like my body is “broken.” Of course, it was and still is really difficult, especially when I still feel so young to be dealing with being chronically ill and seeing my life and future turned upside down by something I never planned for or chose. It’s especially hard seeing people my own age, like my brother, doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find friends around my own age to talk to about being young and disabled in a healthy and supportive way. To me, the word “fighting” sounds exhausting. Sometimes you just want to take off your armor and talk about how hard it is and how it sucks. When this happens, I don’t want to be told I’m inspirational and to “just keep going!” or “battle on!” I just want someone to listen. This is where I’ve found therapy or talking to friends with disabilities helps. One of my friends shared this quote: “Just keep swimming, and when you can’t swim, just float.” Sometimes I just want or need to float for a while. I’m not totally against the use of terms like “warrior” and “fighter” and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems — like the community here on The Mighty. Giving up the fight helped me accept that I was chronically ill as opposed to continuing a battle I was never going to win. It was the right choice for me.

Naomi G.

Why I Don't Call Myself a Chronic Illness 'Warrior'

I just want to say before I continue with this story, I’m not against people referring to themselves as “chronic illness warriors” or describing their “fight” with their illness. It’s just that this language doesn’t work for me. Here’s why. The words “fighter” and “warrior” are often linked with our response to illness. Even when someone has something like a simple cold, they may say, “I’m fighting a cold!” This makes it sound like we’re in a war zone with our bodies and sheer willpower will get us through the day. I’m chronically ill, but I don’t think that makes me a “warrior” or “inspirational.” I’m just Naomi and I just happen to be disabled and living with a set of chronic illnesses and symptoms. Yes, life on a day-to-day basis is a struggle. It takes a lot of effort to do everyday tasks and I require help with things. But on my bad days when I can’t get out of bed, it’s not because I haven’t tried hard enough or “lost the battle.” I’m simply not well enough to get out of bed. When it comes to chronic illness, there isn’t an “after” or “when I’m well again.” It’s a journey of grief, acceptance and coming to terms with the life I have now, and learning to go with the ups and downs of good days and bad days and in-between days. I am trying to let go of the life I had planned out, especially when it comes to my education and the career I’d always wanted (and I still hold out on the hope that one day I can return to it). Some days the grief for that lost life I planned is still very raw. When I first got ill, I did feel like I was fighting against my symptoms, which at the time were “medically unexplained.” I was hoping they would just be temporary, but eventually, I had to accept my reality. When I was fighting against my body, I was just stressing it further and probably making myself more ill in the process. Accepting my disabilities has been hard, and it took a while for me to refer to and see myself as “disabled.” Many times I haven’t wanted to accept the fact that I will be ill for the rest of my life to one degree or another, and sometimes I find myself hating my illnesses or feeling like my body is “broken.” Of course, it was and still is really difficult, especially when I still feel so young to be dealing with being chronically ill and seeing my life and future turned upside down by something I never planned for or chose. It’s especially hard seeing people my own age, like my brother, doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find friends around my own age to talk to about being young and disabled in a healthy and supportive way. To me, the word “fighting” sounds exhausting. Sometimes you just want to take off your armor and talk about how hard it is and how it sucks. When this happens, I don’t want to be told I’m inspirational and to “just keep going!” or “battle on!” I just want someone to listen. This is where I’ve found therapy or talking to friends with disabilities helps. One of my friends shared this quote: “Just keep swimming, and when you can’t swim, just float.” Sometimes I just want or need to float for a while. I’m not totally against the use of terms like “warrior” and “fighter” and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems — like the community here on The Mighty. Giving up the fight helped me accept that I was chronically ill as opposed to continuing a battle I was never going to win. It was the right choice for me.