One In 133 Million

One In 133 Million

I'm not unique. I'm one of the 133 million American's, nearly 40% of the population that lives with chronic illness. And it sucks.

The best way I ever heard someone describe chronic illness was to imagine everyone on the freeway driving an automatic car. Their cars just run and need a little tune up here and there, but that's it. You on the other hand drive an old ancient stick shift. You can't just go with a flip of the ignition. You have to constantly put all this work into making your car run or else you'll find yourself dead on the road.

Ouch.

One In 133 Million

The day I was diagnosed, I felt like I was in an afterschool special dealing with a "special friend." It felt good to know what was wrong with me but then I also now knew what was wrong with me. Things after the big announcement quickly got progressively worse. Medications I was put on didn't work. I had no energy. I had no life. I ended up having to leave my job and blow up my life because I just couldn't manage. It was the worst couple of years of my life hands down.

One In 133 Million

In the meantime, my mom became an over worrier about me and my dad wanted to turn me into the poster child for chronic illness and disease I think he just needed to figure out a way to help something he couldn't, but he channeled it into this "I need to be a warrior," attitude which I did not actually have for myself. He would send me email after email about living with chronic illness. He would ask if I wanted to sign up for medical trials. He took me to a couple of seminars and wanted me to do charity runs and be "that girl." The final straw for me was attending a support group when I was definitely at my lowest, and instead of it being a positive thing, I found myself surrounded by people who described how much worse in detail things could get and that was 100% the last thing I needed, so I left and never came back.

Here's the deal for those with chronic illness---you've got to take care of yourself mentally and physically. This is a given. The people around you will be idiots about your illness. They will give you the worst advice, they may never fully get what you're going through, they will try to cure you with twigs and berries because "it worked" for some distant cousin you've never heard of, but know this---for most people, this is coming from a place of love and lack of education. Communication and education are your best tools to get them on board with what you want and need especially when you need to take a break or you're struggling with your health or things like depression.

One In 133 Million

Know that you get to handle what you're going through your way. Unless you're a minor, you have the right to make your own medical decisions for yourself and you don't have to tell anyone else about them if you don't want to or your doctor to tell anyone else but I'd highly suggest you let someone in. Surround yourself with people that give a damn (idiots or not) who love you and don't make you feel bad for things that are out of your control. And despite my failings with my support group, "your group" can be your family or friends, or someone who shares your same illness, but do find someone who you can be absolutely real with down to the nitty gritty because it will help you not hold on to your feelings and stresses especially if you find them crushing you trying to hold everything together. I am thankful every single day for my best friend who is my angel to the core.

One In 133 Million

As bad as it can get, you've got a life to live and even on your worst days, there are still birds that chirp, and roses that bloom, so keep your eyes open. I may not be a front lines activist health warrior, but I am a champion for myself and my needs and at the very least, those that live with chronic illness should be too. Give yourself credit for getting through another day and thank those around you that truly love you unconditionally.


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Most Helpful Girls

  • I have quite a few chronic illnesses of which many are genetic. When I was diagnosed at 37 with Ehlers Danlos Syndrome. I was told by my geneticist at the time that the type of EDS I had carried with it the greatest amount of pain and depression. I got on every FB support group I could find. Then I met with a wonderful PT who told me that support groups are probably the last place you want to be, because of the fact you mentioned. I have met some bat shit crazy patients with EDS. I love to help others through this journey but I have to fight for myself and the mentally ill ones are the worst. They ask for you advice but then they don't heed it. I know a Mother who has babied her adult child so much that she is unable to think or make decisions. I am 44, I have had 31 surgeries. I had my hip replaced at 40 because of hip dysplasia. I have had 3 brain surgeries since October, 2017 for a VP shunt in my brain because of Hydrocephalus. I just found out that yesterday that C3+C4+C5 of by cerebral vertebrae are worn out and pressing on my spinal cord so I will have to have a 2 level fusion. I am often asked what keeps me going? What motivates me the most is knowing that their are many people who I have yet to meet that need my help. Best wishes.

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    • Thank you so much for sharing. You've been on quite the journey and I can't imagine a second of it has been easy. I truly believe as a few people have also mentioned here, on helping others as well. As cheesy as it sounds, if I can help one person out there feel less like they are alone or can help relieve their stress, or give them all the information or support I can, it somehow makes it worth it in many respects. We all as human beings have that ability to teach and share and on the other end, receive the same given back to us. I truly hope that your upcoming medical procedures go as well as they can and that you can continue to help others.

  • I have Rheumatoid Arthritis & it fucking sucks.

    For a long time I gave up on myself but I realize there are people out there in far worse condition & i gained a new perspective. I am grateful for whst street I have despite having my condition, I try to make the most of it

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    • Thanks for sharing. Perspective is a good thing but so is recognizing like you have that it still sucks and it's okay to say and feel that, but also to know you've got to get up and keep going.

Most Helpful Guys

  • How would you tell a man who wants to love a woman with a miserable chronic illness?

    I love my girlfriend and I have been educated and only rarely ask if she is ok as she got worse. I came to know she got that more often then not and she will tell me if she is not ok.

    Recently it got so bad she can't move much. Soon she will have a big surgery to help. Right now I'm supportive as I can be. She only texts like once a day now and often I wonder how to treat her. Like normal or make texts easier? I know we are one sided for now and I'm ok to wait.

    Is wanting to make her smile when ever I can going to get annoying? I would do that with any girl and with her I want to help her enjoy life when I can.

    Some times its hard knowing she loves me cause when I'm not there she can't just hold my hand. Her texts have gotten less lovey but still she sends me kisses and I miss you.

    The most she loves is that I'm there caring and listening to understand.

    When out with your illness how to do you best feel love from friends and family?

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    • I definitely do not speak for everyone here when I say this because every person is different, but chronic illness tends to involve everyone around the person who is ill because they all become involved in their care. It is important for you as potential caregiver/boyfriend/friend to not just assume that you have told hold everything in and walk on egg shells around them, but rather be equally open with the person and let them know the things you're thinking and feeling as well and to let the person let you know what they would like from you. When a person is at their sickest, many will isolate because they aren't in the best place mentally and physically and they may try to shield you from seeing them like that. For me personally, my family and friends respect these times and I send them texts to know how I'm doing and if I need help rather than them just coming in and taking over. For you, if she doesn't necessarily want you around during her sickest times, you could send some flowers or a basket with some of her favorite things, or some books/music for her to listen to before/after surgery to just let her know you're thinking about her.

    • All right thanks and I do that but it feels like I miss the important times with her. By not being there to even simply hold her hand before she goes under. I get that she wants to probably hide the bad. Any advice you can give me to tell her that I want to go through it all with her?

      I do send her stuff but sometimes I wonder if I'm being to caring and loving. Loving her when she feels unlovable in a one sided relation for now. Think she might get sick of my affections?

      For your family would there be any way you would let them seen you so sick or do you feel you have to go through it alone and will push them away?

      I guess a text is sometimes the best I might get. Which I under stand but it still hurts some.

  • Good on you for figuring it out if you have? Tried going down that path at the start of the year, lasted a month and then spiraled. Pretty sure I'm dying mentally and pysically (no idea how I have a new ache everyday). Pretty much just gave up and in safe mode I guess. Sometimes you just realize it's just whatever and say screw it I suppose. I probably am still around because when I was a kid I vowed to dedicate my life to helping people. Also, I belief getting to be alive is a gift. Sadly, most days I feel like trash. Not sure how to fix that. On the bright side, when it's finally my time to go, it'll feel like a relief? Ha. Hopefully I made/I'd have made some lives better. "Keep on keeping on."

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    • Thanks for sharing. I'm glad you have the strength to hold on for the belief of helping others. I think it helps to get out of your own head sometimes and reach out to those who are reaching for help. There are a lot of people who are suffering for various reasons and sometimes to help them is to help ourselves.

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What Girls & Guys Said

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  • Yeah I can relate. The thing I hate the most that woke me up is how doctors don’t try to find the causes of problems and only care about treating symptoms. One of my problems took 5 years to diagnose that could have been done with $100 x-ray 😞

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    • doctors dont care about healing you, they'd rather just milk you for money

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    • That to. Got rid of my first doctor because she was the most unfeeling human being I'd ever met and found a new one who literally put down her pen and looked me in the eyes to talk to me. The difference is amazing in the level of care.

    • Yup. Similar thing happened to me. Took 7 years to be diagnosed, and doctors appointment after doctors appointment they tested me for the same fucking thing over and over again (sometimes I’d go in back to back days and they’d still test me even though they tested me for the same thing literally 14 hours ago). They had me on 13 different medications when I was 15. To treat the stupid symptoms instead of helping the problem.

  • Loved this MyTake. When it comes to any illness or disorder you do have to take care of yourself no matter how hard it can be. A lot of people can be idiots when thinking they've given you the best advice in the world not realizing we've heard it before a 1,000 times. Really in the end you gotta rely on yourself and be strong.

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  • Thank you for sharing this with us and God Bless You
    your in my prayers and I pray God guides you all the way
    if your not a believer that is fine but least you know there
    is people out here have Chronic Illnesses and yes it's not
    good at all i know that for sure but trust me there is light
    waiting to shine for us all at the end of that tunnel. -Hugs-

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  • I have a chronic illness and it doesn’t affect me in my daily life at all. In fact I’d go as far as to say that most people live half their lives with chronic illnesses without ever finding out at all. It’s no big deal.

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  • I have epilepsy, so I go through that. Going back and forth between doctors. Difficulty in school. Problems socializing. Always on meds. It's like a constant battle between mental health vs physical health. I've been like this since I was 9 so I'm used to it.

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    • Thank you for sharing. I had a boss once with epilepsy. As cool as he appeared to be on the outside, when I got to know him outside of work, he would tell me about how much he lived in fear of losing his job, of having seizures at work, of issues with relationships, and his family treating him like an infant sometimes. From the outside looking in, he was happy and sociable but you can't "see epilepsy" unless going through an episode or a lot of other chronic illness which often makes people assume that one can't be sick or going through what they are going through. It can be very tough to deal with.

  • You are so strong and I wish you many happy endings. Just know that there are people rooting for you

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  • Chronic diseases are the most common of our century. I hope we find a way to control them someday.
    Good luck.

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  • Alcoholism acceptance movement

    I don't deserve to be discriminated against any more. Healthy with my drinking habit. ;-)

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  • I have ADHD, and although ADHD isn’t a chronic disease it does affect my day to day routine, as I tend to talk really fast naturally and I have to put effort to slow down and talk normal, I get bored easily of mostly anything and I pay attention to things that fascinate me but for the rest I tend to struggle paying attention.

    However, I try to not let it define me, even though statistically ADHD kids get the worst grades I graduated high school at 16, with a 3.95 GPA, getting first place while second and third place were occupied by 18 year olds, I have been in college the past year and although it’s hard I keep going and keep my chin up high. Don’t let your deficiencies define you!

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  • Hear you on this 100%. It absolutely sucks. You're lucky you have a friend willing to share the burden, most just don't want to bother.

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  • Thanks for sharing and keep hustling. We all have to, any way.

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  • I was diagnosed with type 1 diabetes (which is an auto immune disease) start of the year. Since then I’ve battled side effects every month. If it seems likely I may have something like lupus too.

    I don’t know if you’re the same but I’ve felt very alone? My dad is type 1 too but has been my whole life and is “normal” now. He was never as poorly as me and I seem to not get better.
    It’s made me feel diseased, unwanted, unloved. I don’t want my friends around me and I don’t want any romantic interests. I don’t want to inflict this on anyone else but dealing with my symptoms is so tiring.

    Am I nuts or do others feel the same?

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  • I have Crohn's disease so I go through flareups with abdominal pain and other issues throughout my body. It can really suck sometimes.

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  • I hope you're ok. I didn't even think that it's that common.

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  • i have a chronic disease xD however it doesn't really inhibit my life in any way.

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  • I like stick shift cars. more control. Also what is your chronic illness if you don't mind me asking?

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  • I have had my share of getting close to death , major illnesses are sadly just a fact of life. . But I was told and I agree with the sentiment , We are all going to die , its when and how , but its what you do with your life before you die. I visited a old man he was in his 80s and got really upset that he hadn't been so selfish in his life only thinking of him self. He died a lonely old man no family , only 3 people at the funeral. That was a very sad day , I hope when I meet my maker I can say I did some good...

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  • Not that many but it is a lot since it is anybody. Nobody should suffer diseases like that.

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  • Wow, thanks for sharing and I salute you.

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  • You are stronger than average person.
    Use it

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  • More power to you 💪

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  • Good take

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  • Nice.

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  • I have chronic asthma and epilepsy

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  • I have a friend with a chronic illness and something I heard that was quite deep was that she said "There's nothing wrong with me, I'm different. Yes, I may have a chronic illness but it doesn't mean I'm wrong, just disadvantaged." I understand people will disagree with that but it's not a bad way to live and my friend is very upbeat for someone with her illness

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    • very similar too me, I chose that I can either feel sorry for myself and let my disability become my whole life, or live my life saying my disability is a part of my life instead, (And yes I still have 'those days' but I allow myself too, reminding myself to let them pass too). And mine is classed as severe/chronic, I'll put it that way.

  • True, chronic illnesses suck. And no one except you and the people who have to deal with the shit daily understand. That's great you have someone to turn to and make you feel less lonely in your battle. People with chronic illnesses definitely go through some trials. Just an hour ago I was begging everything to stop. Now back on my feet sort of lol. Keep trucking. :-)

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  • TLDR, just want to say that your title is misleading, it means cases like you are seen once in every 133 million people, not that you are part of a group that contains 133 million people, which is what you say below.

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  • That sucks

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