Georgia Carr

@georgia-carra | contributor
Five years ago, as a 12 year old, I developed long thoracic nerve palsy which never fully healed. Since then I have been diagnosed with EDS, fibromyalgia and Neuropraxia, making everyday a challenge.
Georgia Carr

To the Person Struggling With Their Illness

Dear Fighter, I say fighter because that’s what you are. You have this incredible ability to fight your way through any obstacle, no matter how big or small. And I know that because you’re still here, and that in itself is an achievement which you deserve celebrate. Right now, maybe your life isn’t where you wanted it to be. Perhaps right now, your body aches. Right now, you may feel alone, scared or sad. Right now, you may feel your strength waiver. Right now, you may want to give up. But I know you won’t. You’ve likely been here before. You’ve felt defeated and deflated, not knowing how much longer you can keep up this battle. You’ve had days where all you can do is cry, where you feel like you can’t cope any more. You’ve possibly looked at your body with hate, despising it for all the pain and loss it has caused you. You’ve been angry and jealous that this is your life, hating your condition for all it have taken from you. You’ve been in pain so strong you would do or give anything for it to go away. But you’re still here. You’re still fighting. You’ve battled, and you’ll battle again and again until you win. You can do this because you are strong and courageous. Know that you aren’t alone. There are thousands of people out there who are walking the same journey as you. And one day you will reach the destination you seek. But this doesn’t take away from how hard this fight is right now. Acknowledge how challenging it is – this does not mean you are giving in to the struggles. Take each moment step by step and choose to take care of yourself, choose to put yourself first. You can be sad and miss the life you once had. It’s OK to be tired, angry and frustrated. Allow yourself to cry and let all your emotions out. Give yourself permission to feel. When you feel that existing is hard, remember that you are worth this fight. You are trying your hardest and that’s all anyone can ask from you. You are human, you cannot always be OK with your illness. You cannot just magically accept pain and the struggles caused by your illnesses and you cannot expect yourself to do everything and be the person you were before you became ill. And I know this is hard. So let yourself grieve the person you once were, and then one day let yourself love the person you are now. It’s OK to feel how you feel, but don’t let it take over you. Keep fighting as you always have, I know that you can do this. You are strong. You are resilient. You are brave. You have done this all before, and you can do it again. It will all be OK eventually. These feelings don’t last forever. Love from, A Fellow Fighter If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 o r text “HOME” to 741-741 . Head here for a list of crisis centers around the world. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Studio-Annika

Georgia Carr

My Collagen Is Faulty – Not Me

My collagen is faulty. It isn’t as strong as it should be. It doesn’t do its job properly and it causes me pain. But that doesn’t make me faulty. You see, my collagen is a part of me, sure, but it isn’t everything. I am a daughter, a sister, a cousin, a niece, a friend, a best friend, and most importantly, I am human. I am different, but who isn’t? We are all individual and we are all flawed. It just so happens to be that my major difference is that my connective tissue is not as strong as most peoples. So yes, I have fragile skin constantly injure myself. Yes, I am often fatigued and in large amounts of pain. Yes, I have postural orthostatic tachycardia syndrome and dysautonomia, and an array of other conditions. But no, that does not mean you have to protect me or “wrap me in bubble wrap.” I’m doing the best that I can do with it all and although I know it comes from a nice place, I really don’t need your pity or sympathy. I beg you, instead, to just treat me as you would anyone else for most of the time. I won’t deny I will probably need your assistance more than others, but I will ask for it when I need it. If you begin to do everything for me, it makes me feel less, like I am broken and incapable of doing things for myself. So, please, unless I need it to be otherwise, I ask you to see me as any other friend or family member. There will be days where I cannot be “normal” because my pain levels have skyrocketed, but just think of these days as any day you are feeling a bit under the weather. Usually, my pain is because I overdid it the day before and perhaps my joints couldn’t take it, just as you would be tired and sore if you overdid it by say, running a marathon. It’s just that it takes me less to feel this way. But as you would, I will manage to look after myself and I will get back up. Because I am not broken. Like you, I have dreams and goals. Maybe I have to set myself a different standard, but I dare anyone  to try to find someone who has the identical dreams as they do. We all have different capabilities, that’s what makes us who we are. Perhaps I have to cancel plans on you, but so does everyone at some point. Maybe I go to bed earlier and drink less than you do when we go out, but everyone, no matter who they are, has different limitations. I have passions and hobbies. Some of which I may have in common with many people, others which are unique to me. As does everyone else. I am, essentially, just like everyone else. Obviously, my life has had to be adjusted to accommodate my Ehlers-Danlos syndrome, that’s no secret. But that doesn’t make me less in any way. It makes me me; it’s who I am. This syndrome is part of me and I am just learning new ways to handle it in the same way you would when you are given an obstacle to overcome. This does not make me any stronger than anyone else or an inspiration for putting up with it. It’s my life and I’m just living it, like you all live your lives. So the next time you go to think of me as different, remember everyone is different. And just because my collagen is “faulty,” that doesn’t mean that I am too. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: deniskomarov

Georgia Carr

How Accepting Chronic Illness Is a Long and Difficult Journey

By definition, acceptance is “the willingness to tolerate a difficult situation.” Sounds pretty straightforward, right? Wrong. In fact, it couldn’t be further from it. Firstly, the term “tolerate” just doesn’t sit that well with me. To tolerate something is to allow it to exist without interfering. And to me, a person with chronic illness, not interfering is completely out of the question. Yes, I allow my condition to exist. But no, that is not at all out of choice. Rather, I allow it to exist because I have to, because no matter how hard I try to ignore it, it will still be there somewhere in the background. And I don’t believe living in denial about my condition did anything to help me. But to not interfere with this condition would be letting it take control of me and that is not something I am willing to do. I will interfere as much as I deem fit as I will do anything to make life that little bit easier, but I fail to believe this means I don’t accept it. This word makes acceptance seem more like giving up, or giving in, which couldn’t be further from what it means to me.   Secondly, acceptance does not mean I will stop fighting. It does, however, mean I will change the way I fight. I will always continue to fight for ways to help, ways to minimize the pain and make each day more bearable. That’s what I need to do to survive. I will battle my way through each new symptom and through all the flares. I will fight so I can thrive and so I can be the best person I can be. But I will stop fighting against the pain and the sickness. I will stop resisting what I cannot control and stick to just fighting for the best way to manage it. Thirdly, and most importantly, acceptance doesn’t just happen. You don’t just wake up one day and begin to “tolerate” living with a chronic condition. It’s a long and bumpy journey to get to the point of acceptance, and truly, I do not believe I am completely there yet and maybe I never fully will be. For me, acceptance comes and goes. It’s a cycle. Some days I still find myself resisting the pain, denying its severity and the impacts it has on me. But other days, I acknowledge what’s happening and look for the best way to deal with it. There are times where I will accept my condition for months on end, until a new symptom arises or it feels like it’s getting worse. Then I will start back at square one. I will go back to denial, back to trying to simply ignore it and just wishing it would go away. But slowly and surely, I learn again and again to stop avoiding the reality. And sometimes there isn’t always a reason, but I begin to try to shut everything out. Sometimes (in fact, very often) I don’t want to have to accept this is my life. I fall into a cycle of questioning why I should have to accept pain, why I should have to accept suffering. I don’t want to believe this is what my life will be like forever and I think part of me hopes that if I never accept it, it will never become reality. But I know this isn’t true. I know that regardless of how hard I try to pretend it isn’t there, it always will be. So, to me, acceptance is so far from simple or straightforward and if you asked me to tell you what acceptance means to me, I would say something like this (and I still believe this makes it sound much easier than it is): Acceptance is about understanding your conditions for what they are and learning to stop trying to resist what you cannot control. It’s embracing the truth about your body, your health and your limitations and finding the best way to manage. After all, it is what it is. And as much as we don’t want to admit it, our conditions are chronic and they’re here to stay. So rather than fighting against it, fight with your body and fight to be the best you can be. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via disqis.

Georgia Carr

When People Forget You're Sick Because Your Illnesses Are Invisible

My Ehlers-Danlos syndrome and fibromyalgia are not always visible to the outside world. Sure, you may notice my hyperextended joints, the occasional wince in pain or the braces I wear. But these things don’t even begin to touch the surface of what I go through. Because the sad reality is, pain is not visible; it is very personal and varies greatly from person to person. No other person, not even someone who has the exact same diagnoses, can fully understand my daily battles, nor can I theirs.   And there is no “test” for pain. Unlike that of a sprained ankle or broken leg, there are no outward signs of damage or pain. For many of those with chronic pain, there is no swelling, there is no injury, there is nothing that will come back abnormal on a blood test or scan. The closest anyone can get to understanding another person’s pain is simply by talking to them, but from my experience that is not as easy as it may sound. For many people, they tend to only believe something if there is proof it exists. And how are we expected to prove something as complex as pain to someone whose medical journey extends as far as the GP’s office? I mean, they can follow me around for the day and see what life is like behind closed doors to see how difficult certain tasks can be and how hard I crash after being out even for the briefest time. But even then, they stillcannot see or feel the hurt I feel. And so, I am treated with doubt, labelled an “attention-seeker” and made to feel as if my struggles are less valid than someone else’s, simply because my illness is invisible. I begin to slowly get left out of conversation and the invites to go out become less frequent. My relationships drift apart and people begin to treat me differently, almost as if I am less. But this isn’t the worst part. It appears that I become invisible to them. Suddenly my needs as a chronically ill patient are forgotten about. Somewhere along the way, it was overlooked that maybe I need a lot of support. Maybe I need people who will listen and be there with me through my ups and downs. Perhaps I even need people who will help me carry things to prevent a pain flare or a dislocated joint. Or maybe I simply need someone to ask me if I’m OK. That person with the rolled ankle who has a slight limp has books carried for them between classes and people offer to get things for them so that they weight bear as little as possible. That person who has had their wisdom teeth removed has people bring them ice cream and soft foods that they can enjoy together. That person with the blocked nose who has returned after a day away with a cold is constantly asked how they’re feeling, if they feel well enough to do x, y or z. And then there are those with invisible illness. Gradually, we may stop receiving the support and care we need. These things may stop, but our illnesses don’t. But no one else can see that, and the longer and longer we have pain, the better we become at hiding it. And this absolutely applies to support from medical personnel. Whether that may be getting dismissed because nothing is visibly wrong so it must “all be in our heads” or whether they have no idea how to treat us so we are sent away with no further assistance. When we are dismissed, our needs pushed aside, it’s hard to feel seen, heard or valued. And it hurts. Badly. So to anyone who doesn’t understand: My illnesses are invisible, but they are real. My illnesses are invisible, but I am not. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Sethislav.

Georgia Carr

Ehlers-Danlos Syndrome: Getting Diagnosed With a Lifelong Condition

A few months ago, after five years of struggling, I was finally diagnosed with Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome (POTS) on top of my current diagnoses of fibromyalgia, allodynia and peripheral neuropathy. It took years of fighting, years of being called “crazy” and an “attention-seeker.” It took days upon days of having to research and advocate for the condition which I knew I had despite constantly being told my doctors I did not. My lack of proper diagnoses for the past five years has made everything much more difficult than it had to be. Whether that be trying to apply for a scribe to sit exams due to dislocating shoulders, or having to explain and talk through my symptoms with all the ER doctors who repeatedly told me “it doesn’t make sense.” Nothing can compare to the frustration and disappointment that is hearing yet another doctor dismiss you because it’s “all in your head” and “you will get better if you see a psychologist.” I have lost count of the number of times I have heard someone tell me my subluxations and dislocations aren’t real and I just imagine them. (I mean, how do you even imagine your joints falling apart?)   It also led me to feel very lost. I found it difficult to explain any new symptoms to doctors as I would find myself being told it was nothing. Hence, I did not treat my body with the love it deserved as I myself began to downplay all I was going through. I even began to lose faith in myself. So I always held onto the hope that getting a diagnosis would make everything better. And it did at first. The moment the geneticist said the words “you have Ehlers-Danlos syndrome” I was filled this overwhelming sense of relief. Finally, everything – all the pain, all the symptoms, all the suffering – made sense. I cried for joy. I felt validated and I felt for the first time that people would truly understand me. But then you leave the geneticist’s office and the reality sinks in. The first thing I struggled with was the risk of being immobile by the time I’m 50. As a 17-year-old, I have never truly had to think that far ahead. My sole focus has been getting through school and going one day at a time. But all of a sudden, I was forced to look at what my life might be like and, while I know being in a wheelchair is far from the worst thing that could happen, the thought of this hit me like a truck. Then the cardiac aspect of my illness affected me. Then the idea of having children. And I began to crumble under the thought of my future once again. Eventually I came to terms with all this but then something more painful occurred to me: I may not ever get better. Before my diagnosis, I was always told my condition would continue to improve the older I got and that all my injuries were simply because I was growing. I was also “always badly injured,” not chronically ill. But now, that’s what I am. I am chronically ill and I will face many obstacles with my health for the rest of my life. And I have found this by far the hardest thing to accept. I had always accepted my pain and everything I was going through, but I think a part of me was always coping because I believed this would go away. So now I have to truly accept my illness for what it is. It is lifelong and it is a battle I will probably face every day for the rest of my life. But I also know I will survive and I will be OK. Maybe it’s a blessing, maybe a curse – who knows? But I guess I have the rest of my life to figure that out. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via artant.

Georgia Carr

Ehlers-Danlos Syndrome: Asking for Help but Feeling Like a Burden

You don’t have to be chronically ill to appreciate how difficult it can be to ask for help. It can quite often be less stressful to tough out your problems alone than to ask for assistance, even if you know it will make everything easier. This is often because relying on others can make you feel like you are annoying them. So what happens when your life is only able to be lived with the help of others? A mental battle occurs. This is a battle in your mind between needing to ask for help, but being afraid that you are becoming too much of a burden on others when you do ask. Which can leave us feeling hopeless or put us in a position of extreme anxiousness and uncertainty. More often than not, the people we go to for help are also the people whom we love, trust and who make us feel safe. And the thought of annoying these people is completely and utterly terrifying.   So then there becomes a never-ending cycle in our minds and it goes something like this: We want to ask for help. No, sorry, let me rephrase that: we need to ask for help. We want to ask those we trust to help us. We worry we are becoming a burden on them. We then fear we will become so annoying they will leave us. The thought of losing said person is heartbreaking. So now we feel like we cannot possibly reach out to them for assistance. We then feel lost and alone. And remember how I said we needed help? That still applies, meaning we are left in what feels like an eternal black hole. This continues over and over again with each person until you feel like there is no one left you can turn to without pushing them away. To feel like you are a burden to those you love is devastating and quite possibly one of the hardest parts of living with chronic illness and chronic pain. I am constantly asking questions: How much is too much to ask? When will this person become sick of me? Does this person really want to help or is it because they pity me? Who will be there for me if this person leaves? When is too soon to ask for help again? I am fully aware that my Ehlers-Danlos syndrome makes me less fun than what I was before my joints kept falling apart and before I was living with constant pain. I know I am no longer the friend who can always be at every event or the friend who you can always rely on to be there for you. But this knowledge makes it ever more difficult to ask friends to help you because you already feel like they must be getting sick of waiting around or changing plans for you. And believe me, the last thing we need is to feel alone. So that leaves me back in a place of uncertainty. It puts me right back at the start, where I feel like I cannot reach out for the help I require. I have experienced a lot of hurt throughout my journey, but I can safely say I will never be as hurt as the times when someone in my support network begins to pull away. Whether it’s the time I was told I was “being difficult” when I had to ask for plans to be changed to accommodate my needs or when I asked my teacher (who I trusted more than anyone and who had been with me through everything and was the only person who made me feel like I could successfully make it through school) if he had time to do a quick favor for me and he replied with “I’m always busy but that doesn’t seem to matter.” Whether it’s the people who reply with “Why can’t you do it yourself?” when you ask for help with a seemingly simple task or rolling of the eyes or the tone people use regardless of the nice things they say. It’s all this that makes me feel like I am nothing but a burden on those around me. Hence, I am having to constantly walk the tightrope between receiving the help I need and fearing that everyone I love is becoming sick of me. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via GPitman.

Georgia Carr

Why I Push Through Fibromyalgia, Ehlers-Danlos Syndrome Pain

Most people would be baffled if I told them that I battle with chronic pain every day. This is not because my pain is any less real than someone else’s. I have accepted that I have fibromyalgia and yes, I do know that I have limitations. But what I also know is that it doesn’t have to take life away from me completely. I am currently in my final year of high school and I’d be lying if I said that pain hasn’t impacted my life greatly. But I do choose to push through the pain, and here are just a few reasons why: 1. I am in pain, but pain is not who I am. I live every minute of every day in pain and it is a much bigger part of my life than I ever would have imagined. But I am not just my pain. I am also a young adult with my whole life ahead of me. I am a daughter, a sister, a niece, a cousin and a friend. I experience many of the same issues and dilemmas (and probably more) as my friends do. I know what it’s like to want to be able to go out and drink. I know what it’s like to have crushes and to spend hours on the phone to a friend discussing boys and clothes and completely stressing out about the smallest of issues. Because regardless of my illness, I am human. Because my life is about more than just pain. It is definitely one part of my life, but it is not my whole life. 2. Maintaining stable mental health is equally as important to me as my physical health. Physical pain is one thing. Mental pain is another. And together, they can make life hell. Having fibromyalgia means that I will always experience physical pain and I am prepared to have flare-ups as a result of sometimes putting my health second. (Just to be clear, I am in no way putting myself in danger by doing this.) I feel the most alive when I am with my friends. I love to go out to nice restaurants and I love to spend time in bustling shopping centers or explore the city. These are just a few of the things that make me happy and I believe I deserve to be happy so I will continue to keep doing them. I believe that just because my physical pain isn’t going away any time soon, that doesn’t mean I have to have mental anguish, too. 3. I don’t want my pain to take more away from me. Five years ago, when I got my first nerve palsy and my Ehlers-Danlos syndrome was diagnosed and I began to understand what pain really meant, I lost a lot. I used to be the best swimmer in my school, I was a dancer, I was top of my class academically. Since then I have had to stop the sports I love to do. I also have lost the ability to write so I have to have a scribe and I struggle immensely to be able to concentrate and retain information like I used to be able to do. But I won’t let my pain take me away from my friends and family. I will go out for dinner, I will go get coffee, I will go shopping, I will go to school, because I will not let my whole life be taken over by pain that is out of my control. 4. I don’t want to be treated differently. There have been countless times when I have spoken about my pain to someone close to me, and all of a sudden I go from a friend or relative to someone who is ill. I am in no way ashamed of having fibromyalgia and I want nothing more than to be able to open up and educate those around me, but what I don’t like is being treated like I am less than someone else because of it. So to the majority of people, I want to appear “normal.” All the people who I need to support me know the truth about what I am like behind closed doors, but to everyone else, I choose to keep my illness hidden so that no one looks at me like I’m different again. I don’t want people to feel sorry for me, I don’t want their pity. Honestly, that’s the last thing I need. 5. It gives me a sense of control. I am a control freak. I like to have everything in order and organized so I feel like I can be in control. As my fibromyalgia has gotten more severe, I have found the inability to control flare-ups one of the hardest things to deal with. But when I push through pain, I feel a sense of control, rather than feeling as though the pain controls me. 6. Chronic pain means it is lifelong, so I can’t wait for it to get better. The word “chronic” changed a lot about the way I treated my pain. Not that it is less important or easier in any way, in fact I’d say it is a hell of a lot more difficult than acute pain, but because it isn’t going away any time soon. For me, this meant I wasn’t going to wait for the pain to get better, because it won’t. Instead, I decided that I would enjoy my life as much as I can while I can. I’m not saying that doing this is easy. It’s far from it. Every day this technique of coping with pain becomes increasingly more difficult, but while I still can, I will continue to live life to the best I can despite pain. This way I know that if pain eventually begins to take over, I can confidently say that I have lived life to the best that I know how. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Grandfailure

Georgia Carr

When Doctors Doubt Reality of Symptoms, Illness

To the doctors who doubt me, I know I’m not the only patient you will see today. I know I’m just another name in a long list of people you look after. I know I might mean little to you and the only reason we came in contact is by fate, because you supposedly are one of the few people who are able to help me. I am conscious of your life being busy and I understand you don’t have all the time in the world to look after just me. I realize my problems aren’t an immediate “life or death” issue and that you probably see people in much more critical condition than I am in. But what I also know is that you are more than just a name to me. Yes, I may not look forward to seeing you, but to me, you were a sign of hope. (I say “were” because you have let me down so many times I now struggle to see you as being of assistance anymore.) As a doctor, you have the power to make a difference in my life, one that I need so very much, even though I am not dying. Because I am struggling. I’m alive and will probably (and hopefully) be for a long time, but I’m not entirely sure I’d say I “live” every day. And I don’t recall the oath you took to say you would only show compassion and human decency to those who were dying. Something about your job makes me believe you are there to help everyone who needs your help, and believe me, I need it. I am chronically ill. I am in pain. I don’t get to live my life to the fullest. I miss out on having fun. I have spent countless nights in a hospital bed. I will probably never get to do many of the things I dream of. Yet somehow, when I speak to you, this doesn’t seem to matter. In what world would I possibly be lying about my symptoms? How could you possibly think that, as if I find enjoyment in wasting my time and money to see you? Do you honestly believe I would take the time to think up some long, painful story and tell it to you for fun? Because if you think that, I have no clue how on earth you possibly became a doctor. You don’t have to completely understand what I go through to help me. I don’t expect you to know absolutely everything about my rare and invisible illnesses, but what I do expect is that you treat me with respect when I come to see you. I am seeing you because I want your help and because I know there is something wrong. If you tell me one more time it’s “all in my head” and I just need to “speak to a psychiatrist” I will hit the roof. I see one every week and have for years. I have tried everything and exhausted every other possible diagnosis you could think of. And your disbelief quite frankly does the opposite of help me, as you are meant to do. In fact, it makes me feel like it’s my fault, which I will forever resent you for. Because if managing my physical health wasn’t hard enough as it was, you have contributed to (not solely caused, but still did not help) my anxiety that I now experience on a daily basis. You see, I am the only person who can truly understand what I go through, and when you doubt me, you make me lose faith in myself, which makes everything worse. So next time you want to tell me that it must all be “in my head,” please think first about how that will affect what is actually in my head. I needed you and you let me down. Next time, I ask you to look at me as more than my mismatched symptoms. I am just as aware of how confusing they all are as you, but they are real. I promise. If there is one thing you can do to help me, even if you don’t totally understand, it’s to believe me. I cannot explain to you how much that would mean to me. Sincerely, Your chronically ill patient We want to hear your story. Become a Mighty contributor here. Thinkstock photo via utah778.

Georgia Carr

Feeling Isolated With Ehlers-Danlos Syndrome

Living day in, day out with the physical symptoms of a chronic illness is hard enough as it is. Dislocated joints are hard, pain is harder, but the hardest part is not always what you would expect. It’s the isolation you feel. I don’t necessarily mean the type of isolation where you are stuck in a dark room alone. While this does happen to me quite regularly, it’s not these days when I feel the most alone. In fact, these days can sometimes be the days where I feel the opposite. That’s because when I am too weak to get out of bed, people start to worry and begin to understand you are sick. On these days, I get texts to ask if I’m OK and people offer to help me in any way they can. These are the times where people show compassion and empathy, and as a result, I feel so loved and supported. But for most of the time, I appear healthy. I manage to get through the day relatively normally and I can usually find enough strength to go to classes or go out with friends. Even though these are the days where I know I am not physically secluded, they are there ones where I can feel the most alone. This may sound rather contradictory, but let me explain. When I am out with friends, I am exposed to their way of life, the way of life I would much rather be living. I don’t mean that they are traveling and doing extraordinary things, but rather I mean the simple tasks that I wish I could do. These include being able to concentrate for more than a few minutes before brain fog kicks in, or watching them wear clothes appropriate for the weather as I wear the same outfit for the umpteenth time as it’s one of the only ones I can wear without too much pain. Sitting in a class and observing everyone around you taking notes easily and quickly makes me boil over with envy as I cradle my shoulder which has just subluxed from writing for a few minutes. It’s sitting at lunch watching people stress over what they will eat when they can’t decide because they “could eat everything” as I have to settle for yet another plate of mush to avoid a jaw dislocation. It’s being incredibly jealous of the people who are able to climb the stairs, as I have to take the lift to ensure my knees don’t pop and the whole world sees me fall. However, even though I feel these things, I could never openly tell my healthy friends this as I fear they will just think of me as being a bitter person. And so, I keep pushing through the day the best I can, which means I will outwardly look like any other person. And on these days, I don’t always get the support and assistance I need. No matter what I look like, I will always be fighting a battle with pain on the inside. But on my “good” days, everyone forgets that and I am expected to be able to keep up, something I cannot always manage. And this is what makes me feel isolated. I will never expect anyone of my friends or family to fully understand what I go through every day, as it’s incredibly difficult to explain Ehlers-Danlos syndrome and chronic pain to those who have never felt it, but it’s incredibly heartbreaking when you tell people what’s going on yet you get overlooked and are expected to manage in the same ways your peers do. Although I want to be, I am not everyone else. And this longing to be “normal” and, even more so, to be understood is what really makes me feel alone. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via TeerawatWinyarat.

Georgia Carr

Special Accommodations for Chronic Illness Are Not Perks

Has anyone ever called you lucky for being able to do things others can’t because you have an illness? I have, and if there’s one thing that infuriates me more than anything, it’s this. I’m a senior in high school, and due to my chronic illnesses, I’ve been given special provisions to help me through. To those who don’t understand, these simply try and put me on an even playing field with everyone else. No special consideration can make up for what I go through on a daily basis. They don’t give me an advantage. One “perk” is my ability to come and go freely. I understand that to most people this sounds like a nice thing to be able to do, but I can assure you, I would give everything to be at school. It’s not a “day off” for me when I stay home. I’m not relaxing and watching movies, I’m trapped in my dark bedroom unable to move due to crippling pain. When I’m not at school, it’s because I can’t be, not because I choose not to be. I can also rearrange my assessments and exams. I have this ability because on certain days I have such intense brain fog that I can barely hold a conversation, let alone concentrate enough to be able to perform during a test. I go to a school that requires students wear a less than comfortable uniform, wearing it causes me too much discomfort, so I don’t have to. I’d love not stand out and to be able to wear my uniform with pride, but sometimes I simply can’t have that material touching my skin. Yes, I have a scribe so I don’t have to write. No, I’m not lucky that I will never feel the fatigue you get in your hand from writing. If that’s the worst pain you have to endure, I’d say you’re the lucky one. Writing can cause me to dislocate my shoulder, often pinching nerves as it happens. I get to take as many rest breaks as I want. This does not mean I have an advantage because I get a chance to think about my exam with the clock stopped. It simply allows me to finish my exam without passing out from the pain. Being able to easily obtain medical certificates does not make me fortunate. I have these certificates because I need them, not because I want them. I do not enjoy taking sleeping pills. I take them because my pain doesn’t allow me to sleep. It is not so I can control my sleeping patterns. Using the disabled seats on public transport is far from relaxing. To me, it feels humiliating. Fellow commuters stare at me because I look like a normal teenage girl. And when I try and explain that I am sick, I have to deal with the repulsive responses about how I am just being a “typical lazy teenager.” The number of people who have called me lucky for having these arrangements astounds me. I live with Ehlers-Danlos syndrome, fibromyalgia and her best pal allodynia. If you think my accommodations sound like “perks,” I’d challenge you to live five years with constant pain and fatigue. Since I was 12, I haven’t gone a minute without pain. Imagine dislocating your joints doing absolutely nothing, or the fear that comes with not being sure if you will be able to move when you wake up because your nerves may have temporarily switched off. Imagine what I feel when certain material touches my skin and it feels as though I am on fire. Try living a day in my shoes and watching everyone around you be able to do the countless things you can’t. When you can tell me what this is like, then I’ll listen to you. Until then, please try to understand that you are the lucky ones and that these “perks” will never make up for all I have lost. Thinkstock image via DAJ.