What You Don’t Know About Me – Life With Invisible Illness

Life With Invisible Illness–What You Don’t Know

What you probably see when you look at me is a normal, healthy 24 year-old. What you probably don’t see is someone living with multiple chronic diseases. When I was 16 years old I was diagnosed with Crohn’s Disease and Arthritis, and shortly after diagnosed with Avascular Necrosis. These conditions can be life-threatening and have a severe impact on quality of life.

While I’m lucky to currently be in remission from Crohn’s Disease and Arthritis (for the most part) and be able to manage my Avascular Necrosis symptoms, I used to be very, very ill. During this time I realized the majority of people could only see me from the outside, and couldn’t see the battle raging inside my body. Here’s what you didn’t know about life with multiple chronic diseases:

Every single day is a constant battle—even the smallest of tasks like getting out of bed become monumental obstacles! During a flare-up, your body is literally at war with itself, and your body pays the price. Getting ready, going to school, going to work, cooking dinner, etc., — normal tasks become impossible missions for people like me living with severe invisible illnesses.

Once you are somewhere like school or work, you’re beholden to the bathroom at your body’s will—you have no choice. The flare up causes severe pain that ravage your insides which makes it hard to focus on school and at work. It’s almost impossible to focus on any task which translates into poor performances. In addition, many medications can cause mental fogginess which makes it that much tougher to focus. Unless you have experienced it, you have no idea how hard it is to concentrate when your body is at war with itself. The next time someone at school or work tells you they have an invisible illness; you better give them some major props!

Your social life becomes almost non-existent. Going out and having fun with friends seems impossible. Not only does being sick make you tired and cranky, but many medications make you even more fatigued, grouchy, and even a little crazy. It’s common for people with invisible illnesses to be anemic which literally saps the life out of you, and that makes the energy and effort required to go out seem impossible to gather. Even if you do make it out with friends, you’ll spend most of the time in the bathroom wishing you were at the comforts of home. To make things even worse, spending all that energy and effort going out with friends will exacerbate your flare up—it’s a lose-lose situation.

People can be very judgmental. Luckily, the vast majority of people are very accommodating and supportive. However, the few people that decide to make mean remarks like, “You’re faking it”, or that, “You’re being a wimp” really hurt. Just because you can’t see it, doesn’t mean it’s not there. It’s hard being a young adult and having to use a handicap pass for parking so that you can even make it inside a store without dying, but then getting heckled and yelled at by people who think you are faking and abusing the system makes it exponentially worse. To have a professor in school think you don’t really have to use the restroom and that it’s not an emergency is very hurtful and painful—maybe if they could see what was happening on the inside it’d be a different story.

Your body gets beat up on the inside and it starts to show on the outside. It’s very common with many invisible illnesses to get symptoms that appear on the outside of your body, some symptoms include: Acne, cysts, hair loss, moon face, water retention, weight gain/loss, and etc., just to name a few. These unwanted symptoms will lower anyone’s self-esteem and make life that much more difficult.

You become very thankful for all the love and support you get from your friends, family, neighbors, and even random strangers. The smallest acts of kindness like someone just asking how your day is going or even someone telling you that you are looking good can make all the difference in your day. You become thankful for everyday and for the possibility of one day getting better. You realize how lucky you are to have doctors and nurses working around the clock to help you get healthier and back to normal. As you get better, you have the desire to help others who are struggling as you once were. You realize that even though living with invisible illnesses is excruciatingly hard, it has made you a stronger and better person.

Author: Dylan B Nelson

After being diagnosed with Crohn's Disease, Avascular Necrosis, Enteropathic Arthritis, and an Atrial Septal Defect, Dylan like so many other people with chronic conditions struggled to manage his health. Being frustrated with the current solutions, Dylan helped create mediswarm.com, a social health network where it's easy to meet other people with the same conditions. Users can ask questions and get real answers, see top solutions for their conditions, and get support from a community of people just like them. Dylan's ultimate goal for MEDI+SWARM is that it can become a resource for individuals who have chronic health conditions to get the help they need and to help improve their overall health outcomes.

61 thoughts on “What You Don’t Know About Me – Life With Invisible Illness”

  1. Thanks for being so transparent, Dylan. Invisible illnesses can be the worst. I could relate to every Crohn’s-related scenario you shared. I remember being an undergraduate taking a Biology final. We had to take identification with us, and my ID (with the characteristic steroid-induced moon face) didn’t match the steroid-free face preparing to take the exam. I had to find another form of identification to prove who I was. Praying that you’re well today. ❤

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    1. Thanks for the well wishes 🙂 Wow, sorry to hear about that experience. Crohn’s is one tough disease. Steroids aka the devil’s drug can be so much help, but are a double-edged sword. I hope you were able to take your final and do well on it! Hopefully, you are doing much better now and are off steroids. Moon faces are no fun at all 😦

      I had an accommodations letter from Student Services that I gave to my professor before my final that stated I could use the restroom, and not have the time spent in the restroom count against my testing time. Well the professor said I wasn’t sick and I was attempting to cheat on the final–long story short I felt it was much more important to use the restroom than listen to the professor. He chewed me out in front of the class, failed me, and reported me to the University for cheating. I immediately lost my scholarship because of this, and after a lengthy appeals process I was able to transfer to a new school without any cheating complaints on my academic record. Thanks again for your comment! I hope you are doing well 🙂

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      1. Oh my goodness! That’s terrible! Sometimes teachers can be insensitive–especially if they don’t know or understand what’s going on. I’m an educator, and we have plans with accommodations for kids who need them. I was able to prove who I was…that was 25 years ago…lol. I’m following your blog, so I can keep up with all the great things going on in your world. Take care!

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  2. Hi Dylan, I’m in the same boat with ya! I was diagnosed in May with Acute Myloid Leukemia. 100 days in a hospital, 2 induction rounds of chemo, more chemo to kill my bone marrow, brothers stem cell transplant to build new bone marrow. Lots of sleepy anti-rejection meds and a half dozen brain foging, body swelling drugs and I’m still here! I’ve figured out a dozen makeup tricks to give me a face again and bought a few wigs and everyone thinks I’m back to normal. Haha, not even, but we fake it til we make it and be grateful we live in a place where we have access to amazing Dr.s, nurses, pharmacists, and crazy drugs that give us back some of what has been robed from us. Chin up, surround yourself with positive people and do what you love, life is a gift!♡♡♡

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    1. Wow, Kristy that sounds like quite the journey. Thanks for sharing a piece of your story. I hope the treatments are helping and that you are doing better now. I’ll be keeping you in my thoughts and prayers 🙂 Thanks for your positivity and amazing attitude; you’re an outstanding example to all of us! Life is the greatest gift, and I wish you all the best! Thanks again for your kind comment 🙂 All the best!

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  3. Thank you for sharing this message with us-yes people sometimes underestimate how difficult it can be living with ‘invisible illnesses’-I’ve seen people around me with invisible illnesses and the number of insensitive remarks they would receive, including a paramedic telling a loved one that her anaemia wasn’t a ‘real sickness’ after she had almost passed out. So once more thank you for sharing this post which was written so poignantly-this needs to be shared.

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      1. Thanks for the reply, and yes I’m doing well. It’s so important we surround ourselves with positive people-the nurses who care, the concerned family, the affectionate friend in order to maintain well. Life only comes once, so we must make the most out of it 😊

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  4. True friends clearly differentiate themselves during difficulties in life. Those who are too ignorant to understand are not worth the time or effort to share the realities. Hopefully, you have enough quality people in your life to minimize the effects of those with “limited cranial function!” Stay focused on your health and the VALUE you bring to this world.

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    1. Haha, very true Doc! I’m happy to say that 99% of people are very friendly and helpful and are willing to assist you in anything. Unfortunately, the 1% that kick you while you’re down really hurts. Thanks for your kind comment and keep being awesome! 🙂

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      1. I recently came across a young lady named Ashley that suffers from Ehlers-Danlos Syndrome. I believe the two of you will be able to understand and relate to eachother’s difficulties even though your diagnoses are completely different. I have attached her blog site for you. By sharing each of your experiences with each other, it will likely help release some emotional “baggage.” It’s just an idea I thought might bring some comfort to both of you. https://expressit2017.wordpress.com/

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      2. Thanks so much for making this connection! It’s always kind of therapeutic to be able to relate to someone going through similar things. I’ll make sure to check out her site and give her a follow. Thanks again, and I hope you are doing well! 🙂

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  5. Invisible illnesses SUUUUUUCK. I’ve had chronic fatigue syndrome and fibromyalgia for about three years, severe (housebound, sometimes bedbound) for the first two.

    Everything here is super accurate. But, personally, I really hated it when people told me I was looking good. It always felt like an attack. Like, “sure, you say you’re sick, but you look really healthy.” Maybe they did mean it that way, or maybe I was so used to the disbelief that I projected an attack onto an honest compliment. I don’t know. (But it was almost exclusively said by the people who weren’t good about my illness in other ways, and I don’t get it nearly as much now that my symptoms have improved and I am less obviously debilitated. Just saying).

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    1. Invisible Illnesses do suck! I hope you are starting to do feel now. I get what you mean when people say that “You look great”, or “You look fine” in a condescending manner. That annoys me as well. For me, when I was having severe moon face or other desirable side effects I would feel really down about myself. So to have someone say that I was looking good really made my day even though I knew they were just being nice. Or when I was coming out of a flare up and I was getting color in my skin again, and somebody noticed that I was looking better and actually complimented me on it, it made my day. I hope those examples make sense, but I do get what you are saying. Here’s to the best year yet! Thanks again for your comment!

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      1. Ah, of course. Those examples definitely makes sense. That’s a somewhat different situation to what I had pictured–I had just jumped to my experiences without thinking (silly me). And it would be lovely to hear in that context.

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  6. First, thank you for following Stilettos, Stoli and Scribbles. If you get a chance to cruise some of the other articles, you’ll see that I (one of the three bloggers at SS&S) have Celiac. I thank God that Crohns is not my cross to bear — all the best to you. I totally get the “invisible illness” issues. It really takes a village to help us function like normal people, and I bless my team, family and friends who help make that happen. Most of the time. 😳

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    1. Thanks so much for stopping by and introducing yourself. Celiac is still very difficult to deal with! It really does take a village full of good people to help us live healthy, normal lives! I hope you are doing well, and I’ll be sure to check out more of your blog 🙂 Best wishes!

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  7. Dylan,
    Pleasure to meet you and I appreciate you taking time to visit my blog page and having a follow. I was reading this and appreciated the fact you shared some personal information about yourself, I can respect that. I am happy you are such a positive person, dealing with an illness isn’t always easy but you seem to know how to keep yourself from falling apart. I look forward to reading more about you in your future post.

    Shay-lon

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    1. Thanks, Shay-lon! I really appreciate your positive feedback and support. It can be tough living with chronic disease, but with kind feedback and support from people like you, it makes it that much easier! I’ll be sure to keep up with your latest posts! All the best! 🙂

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  9. Hey Dylan,

    After seeing your comment on my post, I decided to check your page out. All I can say is, wow! While, I’ll never know your exact pain and feelings. I can relate to so much you have said, i felt like i was reading the words from my feelings. You’re amazing for pushing forward with life and taking the opportunity to try to get others on board with understanding the seriousness with invisible illnesses-looks can be so deceiving! I can’t tell you how many times that other people have told me, “you don’t look sick” or “you look perfectly fine”. That may be true, I only show others what I want them to see though. During major flare ups, I tend to become a loner and avoid people as much as possible. I don’t want others to see my pain or suffering or bring others down with it. It’s such a battle and so hard with judgemental comments when you’re young with a illness.

    I really do applaud you and give you so much credit for posting about these personal struggles. I hope you’re doing well today. By the way, I also followed you and will be checking up on your future blogs. It’s always a benefit to have someone who can personally understand.

    You’re an amazing writer also, good luck with your blogging.
    -Ashley

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    1. Ashley, thanks so much for your kind words. I was really inspired by your blog and your positive outlook on life. It’s really refreshing to have someone to talk with who can relate to the feelings and emotions that chronic disease bring with them. I want you to know that you’re not alone in your battle with chronic disease! I know how bad it can suck when you’re having a bad flare up and consumes your entire life. I was super motivated and inspired by your story–I don’t know you, but you are definitely someone I look up to! Thanks for the follow, and I will be checking out your blog for updates regularly as well! If you ever just want to talk about things feel free to let me know! Sometimes it’s nice just to blow off some steam with someone who can relate with what you are going through! I just had another infusion, and I’m happy to report I’m currently in remission! I hope you are doing well, and I’m looking forward to reading more of your posts! Keep being awesome! 🙂

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      1. You’re very welcome and I’m so glad you could relate to my blog and saw the positive side of it. It really does mean a lot for others to connect with me. Wow! That’s amazing you’re in remission and I’m very happy that you’re doing well. I feel the same exact way about talking with others who can relate, if you ever need a friend-I’m here! It’s very important to connect with others who can truly understand and they just “get it”.

        I still haven’t made a blog past my introduction, lol. I’m such a procrastinator at times! I’ve been planning to write more and usually have so much on my mind but I’m having a difficult time here lately on deciding what topic to focus on at first. Hopefully, something comes to mind soon. I will think of something and then outweigh the pros and cons to it and then .. think of something else! Lol. That “overthinking” has been getting to me here lately. I probably just need to just do it and let the words flow from my feelings and go from there. I just want to make sure it’s helpful to others and meaningful. Ya know?

        Hope you have a great week!
        -Ashley

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    1. Thanks so much for your kind feedback! It really does mean a lot to me! I hope my blog can help other people dealing with chronic illness. I’m looking forward to reading more of your posts! Keep up the good work! 🙂

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    1. Crohn’s disease can be very challenging and draining. A common side effect of Crohn’s that a lot of people have is anemia which completely drains your strength. During severe flares it’s common to do nothing but rest! I’m glad to hear about your patient who is making a recovery! I hope you and they are doing well! I’d be curious to know what diet changes you made for your patient. When I’m experiencing a flare up I completely change my diet. Hope all is well! Thank you again for your comment and everything that you do! 🙂

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      1. Since Crohn’s is an inflammatory disease, I’d highly recommend consuming foods on the alkaline pH scale which lowers acidity. (I’ve written about it if you use my search engine or simply Google for the alkaline scale foods) I’d also suggest nutritious soups, juicing, avocados, smoothies, applesauce, herbal teas for a start. Several people have mentioned they have this disease recently. Perhaps I’ll write about it soon but it’s challenging when everyone has a unique chemical make-up. I pray you can get a handle on this soon and begin recovering your strength. Blessings back,

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      2. Thank you for expanding on these helpful foods. I already eat a lot of the items you listed, and I can notice an improvement in my health when I do. Thank you so much for taking the time to write this up!

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  14. Thank you for reading/following my blog, which led me to yours. Your posts make me realize that I should be thankful every day for my health and not complain about the little things. It really puts things the minor irritations of life into a new perspective. Bless you.

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    1. Thank you for following me back! I can’t wait to read more of your posts 🙂 It seems like each individual person has their own ‘cross to bear’ that can be challenging for that person. We all live differently and something minor to me might be severe to you and vice versa. I hope you are doing well, and thank you again for your comment! Keep being awesome! 🙂

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  15. I know what you mean how diseases are invisible. I’ve been there and I am still doing the same: managing somewhat type 1 diabetes and after all surgeries there is one last surgical wound of big size which is getting better. It’s tough, all injections, tests and insecurity because it’s never known what exactly is going to happen. I was once asked: do you have a day without a pain, and the answer is no. Many people like you go through these terrible conditions. Well, I feel bad about any chronic and difficult condition, and therefore, I’ve been in medical research for more than 35 years. My disasters started after a major accident, not that early as yours, but it’s many years now. I find that art is an excellent cure. I’m also writing about this on my secondary blog which I noticed you started to follow. It’s less visible because it’s secondary, but thanks and I wish you staying strong with all that stuff. https://inesepogalifeschool.com/

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    1. Thank you so much for your comment Inese. Sorry to hear about your struggles with Type 1 Diabetes. However, it sounds like you are dealing with it fairly well, and you have found effective ways, like art, to help you cope with your chronic disease. I agree with you that it seems like there isn’t a day that goes by without pain in it, however, I think after a while we start to build a tolerance to the pain–maybe that’s why we are so tough 🙂 I’ve also realized that blogging and going to the gym have helped me so much in taking my mind off things. It sounds like art is doing the same for you 🙂 You have a beautiful blog, and I can’t wait to read more 🙂 Thank you so much again for your kind comment. All the best 🙂

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  17. I can’t imagine what you have gone through-especially in college. Awful!
    It had to suffer bouts of chronic painful joint issues-my neck from several car wrecks-resulted in surgery which alleviated the pain. Then chronic knee issues. After 5 years of orthovisc knee injections and change of diet, I’m back to a normal lifestyle.
    My husband has been relatively healthy-then got the shocking news he is in early stages of heart disease-for him, its invisible! He looks so healthy but he’s not. Ah the initial depression was hard. But then he decided he had to get his health under control. So far so good. We are so grateful our conditions are being reversed.
    Looks like you’re doing all the right things and most important to be enjoying life!

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    1. Wow! It sounds like you and your husband have both experienced pretty serious health conditions. I’m so happy to hear that you are both doing better. Having chronic hurting joints sucks, and I can’t imagine the fear and anxiety your husband went through. I hope you guys continue to be healthy and are able to do anything that you want! Thanks again for your kind comment. You are awesome! 🙂

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      1. Thank you! Yes, it’s good we’ve been there and gone through it…helps us be more empathetic to others. And encouragers! Keep on trucking’ – looking forward to following your adventures!

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  18. Thank you for your interest in my blog. Thanks as well for this insightful and helpful description of the challenges you face with multiple ‘invisible’ diseases. Too many of my friends suffer from such conditions. I’m going to share your blog with them.

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    1. Thank you so much for your kind comment and your willingness to share my blog with your friends with chronic disease. I hope they can find some value in my blog. I’m looking forward to reading more of your blog! Keep up the good work! 🙂

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  20. I am honored you’ve chosen to follow my blog. And if it assists you in any way on your wellness journey, then I will have fulfilled my dharma. Thank you for sharing your story.

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  21. Dylan, I can’t even imagine what you have endure, will continue to be subject to and still have such a wonderfully positive spirit. As I read I realize how fortunate I and so many are to have the good health that we take for granted. Thank you for sharing this enlightening post .

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    1. Thanks so much for the kind words, Mel. I think we all go through hard battles in life, and hopefully this is the biggest one for me. I never knew how much I took my health for granted until I lost. I hope you are doing well. Thanks again for your comment 🙂

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