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Ehlers-Danlos Syndrome Awareness Month

May 31, 2016

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Look! A video!

It’s not the happiest video at the moment, and I’m sorry, but we really wanted to do something for EDS Awareness month while we still had the time. We talked about making this video for a while, and we started planning something, but then Martina had to get back to Canada immediately for a family emergency, so we didn’t have time to make the video we wanted to make. I didn’t want to lose this chance, though, and I wanted to talk about EDS from another perspective.

What’s happening now is still pretty new to us. In Korea we just drove everywhere, but now that we’re in Tokyo, we’re taking public transportation everywhere, and it’s pretty tough on Martina. Some stations don’t have escalators or elevators, and when she has to climb those stairs it’s really a challenge. It’s also challenging when she has to take the elevator, but in a different way. What do you do on busy days, when you’re waiting in line for the elevator, and behind you in line are an old lady and a woman with a baby carriage? How often do you step aside, how much longer do you stay standing than you need to? And when you do take that elevator, how do you not feel shitty for it? How many people are looking at you and thinking you’re an asshole, or that you’re a lazy foreigner that doesn’t have any respect? It’s really tough for Martina, and some days she’d rather climb the stairs than deal with the shame. She feels guilty and shitty for it, but she needs to use it, and there’s no way she can convey that to onlookers the way old age and baby carriages can.

I actually remember similar circumstances with my father. He has a handicapped parking permit, and has had it for many years of my life, and I remember people shouting at him for using the disabled parking spots. They’d ask him “you know that’s for handicapped people, right? Do you have a disability?” And I felt terrible that my dad has to justify to strangers that he’s never met and will never meet again why he has a permit. Why can’t he go on with his day? Why does he have to stop and tell you about his condition? He was having a fine day, and not thinking about his illness, out with his son, and you have to pull him out of that and make him prove his merits to you. For what? Your thirst for justice?

So I’m hoping this video in some small way can help make people reconsider what it means to have a disability, and to make some people aware that not all disabilities are visible.

But that’s kind of hijacking the main point of this video, which is to raise some more awareness for EDS. May’s the month for it, and I’ve got a couple more hours to publish this before it’s not May anymore! Here, check out the Ehlers-Danlos website for more info. There are a few different kinds of EDS. Martina has type 3: hypermobility. We’re actually going to see a specialist in Tokyo for the first time ever! We’ve been waiting for months, and we finally have an appointment with him. Martina’s never been to a specialist for EDS before, and she’s had really bad, hopeless experiences at other doctors. But not all hope is lost: here’s to hoping our appointment this month works out well!

Otherwise, we’re going to have some happy videos coming soon. We’ll be filming Eatyoursushi! We’ve got another video almost edited and ready to publish, probably for Thursday! And now that Martina’s back in Japan, we’re going to start filming some more videos. We’ve got some big ones in store for June :D Yay!

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Ehlers-Danlos Syndrome Awareness Month

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  1. I know the exact feeling of shame you discribe. I have been having trouble walking up stairs for years now and when I have bad days I’m currently even in a wheelchair because my hips refuse to work properly. It’s just constant pain in my hip. People can’t see it from the outside so most of the time they don’t believe me (even my group of doctors) and they all blame it in my mental state of mind. They say the pain is because of the stress. All but one Doctor. He wants me to get tested for EDS. And looking at al my symptoms I think there is a big chance I have one of the types. It just scares me a lot. Will that mean the pain will only get worse? I’m 23 years old and my boyfriend takes care of me fulltime because I can’t do a lot alone. While before I was this perfect little housewife. My whole house was neat and clean, and I loved doing that. Now I feel like I’m stuck in bed with nothing to take my mind of the pain. I want to be my happier self again. I really look up to Martina, being so hapy regardless of all the shit she is going through. You guys help me a lot! Thank you so much,

    Tomorrow I’m going to send in thhe needed infirmation for me to get tested for EDS.

    8 months ago
  2. Martina is so inspirational for being able to be so positive even with EDS! I watched some other videos about you guys talking about it and I could never imagine my joints constantly popping out! 마티나 최고!! 凄いです! I have really low pain tolerance. But my arms twist and turn in all directions like you guys once did in a different video hahaha. My jaw and thumbs and fingers and toes actually pop. It really freaks people out lol

    9 months ago
  3. I’m sure you’ve heard about this, but I watched a documentary about EDS where a young woman with hypermobility EDS said moving to a warmer climate (Texas) has helped with the pain, as cold conditions worsened her pain. I don’t know if that is true for Martina, but hey if you have to live in tropical climate to even slightly help with your invisible illness, then go for it! And obviously, we <3 you guys :)

    10 months ago
    • I know the exact feeling of shame you discribe. I have been having trouble walking up stairs for years now and when I have bad days I’m currently stuck in a wheelchair most of the time. But I promise I will send out the needed information for me to get tested for ESD. I’ve been putting it off because I am so scared of the damn results!

      8 months ago
  4. Omg. Can’t believe I can finally reach out to you guys. Good luck with your appointment Martina. Hope everything works out in your favour. And even though I personally don’t have EDS, I do have scoliosis, so there were a few things Simon mentioned in the video that I can relate to in some ways. But I’m glad you have such a positive outlook on things. Hope you find joy in knowing that you inspire people like me to actually get up in the morning and live life. You rock.

    10 months ago
  5. Hi Martina,

    Have you tired any dietary supplements for your illness?

    I have proctitus and the Meds the dr gave me are causing me to loose my hair.
    Because of this I am looking into supplements.
    I wonder if epicor or cats claw would help you?
    Recently I also placed an order for Greek Mountain Tea,
    It came in today I look forward to trying it.
    Also I placed an order for a supplement called epicor. It should be in soon.

    Feel free to read about the supplements I mentioned, I do not know if they would help your condition. If not there has to be a natural remedy out there for you.

    Let me know what you find in the way of supplements and progress.

    With the internet we can find what has worked for others who have our issues and try it!

    Later,

    Warm regards,

    Jamie

    Jamie

    10 months ago
  6. Good luck with your appointment Martina! I lucked out and there is a Doctor near me that is on the Board for the EDS Society! I finally got an appointment…but it is not until December. Arrggghhh. Here’s hoping both of our appointments are worth the wait!!

    10 months ago
  7. http://www.iltasanomat.fi/terveys/art-2000001193094.html This is an article about a Finnish 17-yo girl who has EDS. She’s baking amazing cakes to earn money for treatment fees, and to get her mind off the pain. Just like Martina, I find her truly inspiring! She doesn’t let the syndrome affect her life too much, but instead found a way to do something fun and cope with it. They’re both every-day-heroes!

    10 months ago
  8. I also have EDS and I would never have been diagnosed if it had not been for Martina’s willingness to talk about her condition. I can relate to having horrific experiences with doctors. I am 39 years old, and just got formally diagnosed last month after going to doctor, after doctor since my early 20’s. I have been told that I just had anxiety and never learned to cope….I have been treated like I was looking for pain meds and told to take Ibuprofen (I hate taking medication of any kind) and those are just the doctors I have seen to deal with the joint pain. Not the other crap that often goes along with EDS. I had never even heard about it until I saw Martina’s Draw my life video. I still didn’t put 2 and 2 together until later, but that isn’t really important. What is really important is the awareness that you guys are spreading by being so open about it. I am really grateful to you guys. I can totally relate to the guilt thing too. I have 2 kids who I want to have unlimited energy for, and knowing that I have passed this on to them makes me sad, but knowledge is power, and this condition might slow me down, but I won’t let it define me. I have started on The Cusack Protocol, and I am seeing some improvement which gives me hope. I hope the EDS specialist can help, and that he/she is easy to relate to. Martina & Simon, FIGHTING!

    10 months ago
  9. Hi guys. I feel like I am really lucky to be generally in good health. It’s something a lot of people take for granted. As I’ve gotten older, I’ve thought a looooot more about ‘invisible disabilities.’ I’ve had my own issues with depression (mostly in the past, thankfully), and I still have issues with things like panic/anxiety.

    I remember that when I was younger (full of that clear self righteous judgement a teen/young adult has), I would give second looks to people that seemed like they were healthy using handicapped parking. Now, my boyfriend is dealing with a back injury that makes it extremely difficult to walk sometimes, and I WISH we could get a placard for him.

    Thank you for sharing this video and your perspective, Simon. I really hope the specialist visit goes well. I’m glad doing videos brings Martina joy, because it brings me joy to watch them.

    10 months ago
  10. Hello, Simon and Martina.
    I hope you’re reading this now. I want you to know about one great man and about his method, who I strongly believe can help Martina with her desease. His name is Wim Hof. Don’t believe me just watch the VICE documentary about him(just type Inside the Superhuman World of the Iceman) and try his exercises and see how you feel. I’m not advertising him, just want to share the real thing, help you and pay respect to this man. Just try his free exercises(http://www.wimhofmethod.com/video-miniclass/) and see what happen. I’m talking from my own experience: my health improved tremendously, also if I’m feeling like I’m getting sick, I can get rid of this illness/virus etc. that day and again be healthy, just couple of hours, I also feel comfortable and warm wearing just t-shirt, no coat, at the 0 gradus celsius temperature and lots of other different miracles what is in fact are natural for human-being, and that is just the beginning.
    People come to him with cancer, heart deaseases, auto-immune deseases, people above 70 etc and climb with him the mount Śnieżka, Kilimanjaro just in shorts in the record time, can you imagine?
    Just try his exercises and watch the video.

    10 months ago
    • * I’m not suffering from eds, but this man does miracles, see if this can help you, it’s highly worth trying to.

      10 months ago
    • And for all people that are reading this, throw away any disbelief an just try! Experience it yourselves.

      10 months ago
  11. Hey, I was wondering if you knew when the shirts would return to the EYK Store? Please take my money!!

    10 months ago
  12. Having EDS myself I can completely relate to many things talked about here. I’ve been yelled at for parking in disabled spots (even though I have the necessary permit) and have been told “take the stairs, the elevator is for those who need it, not lazy people”. These things are beyond hurtful and have made me feel incredibly guilty. I also have anxiety and because of my experiences I often won’t go out by myself to run to the store or anything without someone with me because it’s gone so far in the past that I was afraid for my safety from threats.
    There are so many struggles having a disability that feeling guilt and fear for elevators or parking/seating really shouldn’t be one of them.
    I ask anyone who reads this, if you ever witness these things, please step in and defend them. Show someone that it’s okay if they have an invisible dosability, they don’t need to feel guilty.
    Its a rough world but we can all get through it if we look out for one another.

    10 months ago
    • I’m so sorry you’ve had to deal with on that :( I don’t get it, why can’t people understand that some of the worst disorders are the ones you can’t see??

      10 months ago
  13. Hello Simon and Martina. Do you know Japan has badge for invisible disability? It tells people that you have a medical condition, and is entitled for a seat if necessary. I think you should look into them, as I think it will make you fell less judged on. Japan also has badge for pregnancy. If you have any of these badges, people will be kind and offer you seat or help you in times of need, without you having to feel guilty and ashamed about it. And you shouldn’t, just because we are “sick”, doesn’t mean we are less deserving. Please be healthy and happy, hopefully you will find light at the end of the tunnel with the doctor appointment coming up.

    10 months ago
    • I was curious about this and looked it up, it looks like a really good idea! I’m glad you were able to share this information with Simon and Martina.

      10 months ago
  14. I can’t imagine what a “bad” day must be like for Martina, but I can tell you both that your videos certainly make my day happier!

    I have Type II diabetes, nowhere near as life-affecting as EDS, I realize, but it is another invisible illness. I understand the guilt/embarrassment when your needs put you at odds with “normal” people. In my case, going out to dinner with my family and friends can be a challenge, because I have to watch what I eat so carefully, and as for social drinking…psh, fahgeddaboutit! Luckily for me, like Martina has you, Simon, I’ve got my husband and family as a great support group, and that makes such a huge difference.

    I definitely agree that yelling at people for parking in a handicap spot when they look “fine” is a bad way to go. As you said, if that person is doing it because they are an a$$…, then yelling at them won’t make them care any more than they did before- and they may even see it as a challenge to be an even BIGGER a$$… next time! On the other hand, if that person has an invisible illness, yelling at them will just make them feel worse than they already do. Hurtful words can stick with you a long time. I was once accused of being a “drama queen” when I had an incident where my blood glucose level dropped too low due to the fact that I didn’t eat when I should have and nearly passed out. Needless to say, that person is no longer a “friend”, but I can still remember how mortified and hurt I felt at the time.

    Anyway, Martina is lucky to have her Ducky, and we’re ALL lucky to have both of you to brighten our days!

    10 months ago
  15. Yes, just yes. This strikes such a cord with me. The guilt. When I was 18 my kidneys were majorly screwing up. I gained 60lbs of fluid weight in a week. I couldn’t walk my feet were huge, but because of the guilt i felt I refused to use the carts in stores even though my family begged me to. I didn’t want to be seen as imposing or worse, be fussed at for not needing one. I couldn’t do anything by myself. I had to have help brushing my hair among other things, I even sprung a leak. The excess fluid in my body started leaking out through one of the stretch marks I gained. You couldn’t tell by looking at me. I am blessed to say, that my kidneys are in full working order now, but there is still some left over damage. My joints don’t pop out ,but thirty minutes on my feet or just a little walking and I am in so much pain. That experience taught me not to judge on appearance. Thank you for talking about this from your side, and about the uncomfortable bits. You are such a great man and Martina is blessed to have you. I was blessed with my husband as well, he was my boyfriend then. He means more to me than anyone I know. He is the only one who could have walked away and never been bothered by it again. My family I had their number and knew where to find them :D. He chose me and chose to help me. Like you are choosing Martina. Thank you for being her support. Martina, You are amazing and your love for life and your vibrancy are inspiring. You make me want to go out and love the world no matter what. Thank you for sharing your problems. I know it isn’t easy to talk about.

    10 months ago
  16. *policy

    a lot *of practical things

    My God these typos… jeezus. And there are a few more even, that I can’t correct with an asterisk. I need to sleep. ^^

    10 months ago
    • Also, I just realized that this comment-page doesn’t acknowledge any of my Return-key presses (beginning new text rows), so my texts look a bit weird. :P

      10 months ago
  17. Thanks Simon, I’ve often caught myself thinking bad thoughts about those who park in handicapped zones and look perfectly normal – never said anything to them, but still, you are right, just because they “look” normal, does not mean they are not in pain etc. Invisible illnesses are hard to comprehend and understand by those not suffering from it.

    Regarding EDS treatment – I’ve read a few reports stating that bee venom works well to treat EDS related pain – AFAIK Japan embraces natural treatments, so perhaps you can find a clinic/hospital somewhere close that could offer this? It’s not for everyone (the bees die and it hurts – also still experimental) but It seems to work wonders for some.

    10 months ago
  18. I post my comment again. Because I found very good information for helping Martina’s circumstance. I’m Japanese though, I haven’t lived in Japan for 2 years and known recently Japanese movement about indivisible disability. It has been pointed out by media and Internet in Japan. People are getting to know there’re people who suffer from many kind of difficulties even if they look nomal.

    Tokyo city has provided “Help Mark” that tell the holders have invisible disabilities and need helps.
    http://www.fukushihoken.metro.tokyo.jp/shougai/shougai_shisaku/helpmark.html
    This mark’s mean has been announced at Toei metro stations and insides of trains and buses in Tokyo. It is also shown at priority seats on Toei buses and metros to offer seats to the mark holders.

    This is the CM video that is aired on trains to tell what “Help Mark” is and encourage to help the holders.
    https://youtu.be/bhXIEJDMcJ4

    This attempt is in only Tokyo yet. So I don’t know how much campaign is conducted at JR. But I think it will help you rather than nothing. You can get this mark at each Toei stations except some stations including Sinjuku-Eki.
    I hope this information is helpful for you.

    10 months ago
  19. So excited that Martina gets to go to a specialist! I hope that appointment goes well!

    10 months ago
  20. I know I posted this on youtube but I know sometimes it’s easier for you all to read the comments on your blog and I don’t see why posting it again could hurt. :)
    I know I don’t comment often on your videos but I just want to say;
    To Simon: You are an amazing husband and wonderful support network for Martina. You do so much for her by showing her all the love you do. You sir are what young males should look up to because of how loving, thoughtful, caring, supportive and understanding you are in your daily lives not just with her EDS but just in general. It really is so sweet to watch these videos and see the love you two have for each other, even if some days are a little harder than others.
    To Martina: You are an amazing human being inside and out, even your ouchie bits. Watching your videos cheers me up on days where I don’t want to do anything but become a human burrito in my bed and stay there grumbling at the world. You are a bright ray of sparkly sunshine that even the darkest clouds can’t dim forever. Remember that every cloud has a silver lining and that silver lining is you missy! You have all of us and your wonderful adoring husband to help you remember that every minute of every day and when you forget it or start feeling down, just remember that it can’t rain forever. Bad days will happen but they are only a fraction of your life so roll with the bad days and let them happen but don’t let them get you down cause tomorrow is a new day and it looks promising!

    10 months ago
    • Very well said! If making videos for us is what makes Martina happy, we will always be ready to watch whatever they put out for us because we know how much effort went into it & how much happiness Martina & all of us fans get out of it.

      10 months ago
      • Yup! Heck if she just decided to make a video where she rambles for twenty minutes straight about her day and how her little garden is doing or about how the light shining through this one tree is so peaceful I’d would watch it. I’ve not missed a single video and now knowing that doing videos makes Martina feel better it makes me want to watch even more stuff from them!

        10 months ago
  21. this was a great post and video. so far i havent been diagnosed with it, mine is genetic rheumatoid arthritis. and i hate it so much. currently my biggest flare up is with my right hip. some days i cant walk, or barely walk. or even lifting my leg while laying on my left side to rest my hip joint to get comfort is excruciating pain. it even affects my rib joints, knees, wrists, hands…and i have other issues…i know i am not talking about EDS, but i can sympathies greatly with the embarrassment, and shame. lately to go to the big stores, i have been having to use the electric scooters…i get stared at, grimaced at…some people talking about me right within earshot. saying im being lazy, ect… i have always had weak joints. last year i almost broke my ankle and had to use the scooters and handicapped things, the issue was visible, and no one said anything when they seen this huge walking boot on my leg.
    sometimes, i feel bad going somewhere like walmart, and using the scooter, because i feel like i am taking it away from an elderly person. i even have to use my mothers walking cane, when she is at home and i run the errands.(she has bad knees). people look at you, and think because you are younger,(im 35), you should be ok, up and moving easily! they do not see the pain, or the nights ive cried from the pain. some of my symptoms sound similar to EDS, but, atm, i have no insurance, to even test for it. every since i was little, my ankle joints have been like rubber. xD i can be walking, and boom! ankle gives out. sometimes i can recover from the fall, sometimes it leads to a bad sprain, to like last year, an almost broken foot and ankle. torn tendons, and ligaments.
    i could go on, but i wont, because it can be depressing. i love you’re guys’ videos. im always learning new things, and i look forward to them so much! i dont always comment, but i always try to hit like on them. sometimes i dont get to read the blog posts much because i am dyslexic. (lots of correcting went on here.lol) so sometimes, posts can overwhelm me, and my eyes, if that makes sense? im sure others with it know what i mean. its crazy. but again, thank you for making this. i wish i could hug you guys. you both, really touch so many of us, and make a difference in our lives. and give us something to look forward too. thank you being Simon and Martina, and never changing to make others happy. <3 because you make us happy already the way you are!

    10 months ago
    • I’m 24 and have EDS, I completely understand what you mean about scooters! My partner made me use a wheelchair a few weeks ago when we went to the zoo because I needed it but felt guilty and self-concious about using it. Sometimes I think being young and disabled is harder than old and disabled.
      I hope your pain eases up some, I know how much it sucks to be in pain and feel like no one really understands but there are others out there supporting you through the rough times. <3

      10 months ago
  22. Hello Simon, this is the first time to post my comment. I’d like to tell you about Japanese disabled parking spaces, you might already know it though. Any legal permissions to use the disabled spaces don’t exist in Japan. You can park your car at the spaces by your honesty and you can buy car stickers described disabled symbol at homeware stores. So I sometime hear troubles like what you told in this video. Because it’s difficult to know who really have disabilities and special needs. I believe that government official disabled permission should be provided by proper assessments, avoiding these kind of troubles and feeling awkward.
    Instead of disabled permission, Japanese people with disability have disabled ID which is provided by councils. Although You need to have assessments to get it and I’m not sure that foreigners can get it, there is worth to try it. It’s very helpful when someone tell you something about using disabled spaces. I think that Matilda can have more confidence and feel at ease to use the spaces, if she have it. It also gives you transports’ discounts for buses, trains and highways.
    Please ask it to welfare service at your council, which is called “Fukushi-Ka” in Japanese. I hope that Matilda will get ID and your staying in Japan is more comfortable. Good luck.

    10 months ago
    • OMG! I’ve realized my big mistake now!! I wrote “Matilda” as Martina’s name. Very sorry… Why did I do this. I don’t know where to put myself.

      10 months ago
  23. I’d like to thank you guys a lot for the stuff you’ve done about EDS, especially since my mentioning your videos about it to my wife helped her realize that she had it, too. She’d been wondering for years what all her pain was when the doctors couldn’t figure it out. Now she has a name for it and, while it doesn’t make the pain go away for her or anything, it is a relief to her to know that it’s not just some weirdness that she alone is dealing with. And Simon, I just want to say that you’re awesome, too, since I know what you mean when you talk about how hard it is to watch Martina be in pain. It’s hard to know that there’s really not much you actually can do except love and care for your spouse as much as you’re able. *hugs* to both of you.

    10 months ago
    • Sometimes finding answers such as a diagnosis helps our brains cope. We assume we should be fine unless there’s a diagnosis. I’m really happy she has an answer, I just hope she can learn ways to manage the pain. =)

      10 months ago
  24. My father who is a USMC veteran and also suffers from Lupus and many other problems, never wanted to get a disabled permit because he felt like he didn’t deserve it because he could still walk. And he’s been harassed by quite a few people. They even see that he has a USMC sticker and mention it but don’t put two and two together. I don’t know why people think they can go up to a stranger and just go off on them. Not cool.

    10 months ago
  25. I know exactly what you mean about the guilt that comes with an invisible illness. Even if you don’t necessarily want to (or mean to), you somehow always end up apologizing or making excuses for something that isn’t your fault and you have no control over. Because people (especially complete strangers) really want you to explain yourself. >:( It really sucks!

    This may be a strange thing to say, but if worse comes to worst, I think perhaps bringing a crutch along or even a cane can help with the judgmental stares when using the elevator. Sure it may be inconvenient, but I think in this case it will help both parties (if even a little bit): Martina so she can use the elevator with less guilt, and those around her to understand (by presenting a visible representation of a disability). I actually have an extendable cane that I can fit into my purse for times like these… because I have a phobia of going down stairs called climacophobia. It was way worse before to the point that I would actually never ever go down any stairs and would prefer to walk blocks (or even miles) around the problem. These days I can *slowly* and *very carefully* climb my way down, but it takes a tremendous effort. Judgemental stares from others really doesn’t help… least of all when a rude asswipe decides I’m being too slow and starts to push!! Screw you for setting me back 10 notches!! D:< Thankfully ramps and elevators are a thing here in the U.S.

    Keep fighting Martina! We can't change who we are or what we have, so we can only ever find ways to deal. In my case, it won't get any easier, so I can only get more used to it. But that's okay! I'm hoping someday, it'll be the other way around and more people will get used to ME. And disabilities in general! But until that day comes, let's be strong. :)

    I really hope for the best with the EDS specialist! No matter the outcome, remember that there are people who always have your back and will always be there to support you.

    10 months ago
  26. I have severe ME and POTs and my best friend has EDS type 3 so I know how hard it can be. At the moment I use a wheelchair so my illness is ‘visible’ in that sense, although I still get people telling me I look fine. But I used to have the fear of people judging me coz I had to use a disabled parking space or god-forbid I stood up when I was in my chair (because of course all people who use a wheelchair are paralysed… :/) I think it’s great that you are using the platform you have to raise awareness :) and I think Martina is amazing to keep doing what she does despite the pain!

    10 months ago
  27. I really hope the doctor can help her. Fingers crossed! I think many people are going through things that you don’t even know about. Probably everyone you come across is going through something. Anyway, it’s good to just be kind, Always. *hugs*

    10 months ago
  28. I don’t personally know anyone (besides Martina, I guess) that has EDS and I only really know 1 person with an invisible illness, so I’m one of those people that this doesn’t affect too much. But I’m still so glad to see you guys addressing it. you have a massive following and being able to use your fame to spread word is so admirable and wise and kind and I’m glad to be able to learn in a safe place.

    I’m sad that the time in Tokyo is hard on Martina but also glad that you guys did move while she can really get out out there and enjoy it. I really hope the visit with the specialist goes well and some of her pain and hardships are lessened.

    Social justice seekers…are just terrible people. Maybe because there are never really good stories about them, but I don’t understand why someone would just start yelling at another person. You never know what someone else is going through and while, I’m sure, their hearts are in the right place, they are truly just making things worse.

    Finally, Simon – you are just the best husband ever. Even though we don’t see everything, what we do see and hear from you guys just goes to show how much you care about Martina and how much you’ll do to keep her happy. I truly wish you both the best and I’m so glad she’s back home (your reunion video was posted the same day I was leaving my LDR bf so it was double feels day!)

    10 months ago
  29. I can’t tell you how much it means to me that Martina is willing to share her experiences with us. I’ve had EDS with hypermobility for years and had no idea what it was until Martina made her draw my life video and mentioned it for the first time. I can’t explain the relief I felt of finally understanding what was wrong with me. Thank you for raising awareness, and thank you Martina for showing us that the pain isn’t in control of your life, you are. I love that you don’t let it stop you from living your dreams.

    10 months ago
  30. I have a friend with hypermobility EDS, she’s in her early twenties so she doesn’t look disabled either. She regularly gets crap about parking in handicap spots, and I know how hurtful it can be for her. Some days she’s in a wheelchair, some days it’s a cane, and some days she looks normal-just because you can’t see disability doesn’t make it fake. So glad you’re using your videos to raise awareness about invisible illnesses.

    10 months ago
  31. Hi guys, thanks for starting this dialogue. I think there is a lot of good information here. I know it’s not your usual content – but maybe you could put out another video on how to help people with invisible illnesses. Like for significant others and friends. A lot of commenters have resonated with the feeling guilty. So as their cheerleaders how can we help them without making them feel guilt?

    10 months ago
    • That’s a great idea! I’ll think about it and see if there’s anything I can make a video out of. For now, I’m still new to this. Martina’s condition is worse now than before. I’m trying to figure out how to be the best I can for her

      10 months ago
      • Simon, you really are doing a wonderful job of being everything that Martina needs. Thank you for being an example of what a true friend & spouse should be! (Maybe you can work on putting the toilet seat back down, too lol) But seriously, Martina, please try not to worry so much about what negative things negative people will think or say. There are far more of them in the World than there are nice people & you’ll only drive yourself crazy or constantly depress yourself with thinking of them. You’re too good of a person to let them get you down!!! You’ve both literally helped over a Million people get through their daily lives a little happier & a little smarter: not many people can say that. Worry about the people you care about & please don’t worry about the people who would never care about anyone but themselves.

        10 months ago
  32. I think the best advice I was ever given for dealing with chronic illness was: “treat yourself with at least as much kindness as you would give a stranger.”
    Would Martina ever say any of the things she says to herself to me or any other spoonie? I’m willing to bet that it would never cross her mind. It’s okay to show yourself a little bit of empathy.

    10 months ago
  33. Martina and Simon,Ya’ll are really the only people that I follow online and I love how much i have learned through ya’ll. I understand how nasty people can be. A few years back my husband through out his back and had to use one of those motorized carts in the grocery store.. an old lady looked at my husband and told him he was playing on it and shouldn’t use it. Was made for “handicap people only!” .. Not knowing my husband really did need it and just had been discharged from the hospital. I know that when ever I have hurt myself and needed to use one.. I never did. I always felt I wasn’t handicap enough to use the services that i should. I somewhat understand that guilt and the judgmental eyes. Martina you are strong, powerful and adorable! You and Simon remind me a lot of how my husband and I act. I am not as sticker crazy or pink crazy, BUT my husband is definitley the comic book and Anime dorks that ya’ll are lol … Never feel guilty for the cards you were dealt and I understand that it is harder to be in a foreign country and deal with an illness. Ya’ll are amazing and I am happy that you make the videos when you can. I will watch them until ya’ll decide to stop (which I hope isn’t for a very very very ……… very long time!) … :)

    10 months ago
  34. Thanks for the video! I actually found your channel due to other videos you had done about EDS. Now I am hooked! Your videos have helped get me through some horrible days when I couldn’t get out of bed! I love your positive outlook and all of the fun you have.

    10 months ago
  35. Hi Simon and Martina,
    I wanted to say thank you for all of the awareness you have brought to the general public about EDS. I was diagnosed with type III EDS 4 years ago, and I know exactly what you mean about the guilt. I really prefer not to mention my EDS to people, or downplay it, like saying that my ability to pop my joints out of place is a “fun party trick.” It’s really affected my jaw the most, and I’ll be having my second surgery on it next month. But watching Martina live her life to the fullest, even though I know how hard it is for her, is incredibly inspiring. Keep fighting! You have a fan for life.

    10 months ago
    • Best of luck with your surgery. Martina’s never had one, and she’s too afraid to. I hope yours works out for the best!

      10 months ago
  36. <3 The guilt is a killer in a way few understand. Even when they're right there, not everyone gets the guilt in the way Simon seems to. When you're fiercely independent, having to ask for anything at all can feel like such a betrayal.
    Now I've made myself sad….none of that!
    I hope that today is a good day and if today is a struggle, there's always tomorrow. That's what I tell myself anyway. Y'all are always on my mind, stay zebra strong.

    10 months ago
  37. These are the kinds of issues I wish we’d talked about more in school. There was a lot of focus on visible disability and not bullying/excluding people (which is great), but issues like invisible illnesses were never really discussed and it’s such a big thing. I think with understanding comes compassion. And I really want to thank you guys for being real and opening up the discussion; sometimes I feel like we learn things in a clinical way (like, here’s the pamphlet to take home, kids). It’s nice to kind of be invited to a discussion and encouraged to go and learn more/ask questions. You guys, as always, are gorgeous human beings. Thanks for sharing yourselves with us ♥

    10 months ago
  38. You know, I had never heard of EDS before Eat Your Kimchi, but since you’ve brought light to Martina’s illness, I am more informed and know how to better empathize with other people who have invisible illnesses.

    I myself suffer from chronic depression and a number of other disorders that are all mental. So I’ve never had to experience the embarrassment of having to use a handicap spot or an elevator, but I do know the feeling that you get when someone is all “But I don’t get it you sure LOOK okay!”

    It’s like, thank you stranger, I’m all better now that you’ve told me I look fine… Ugh. Anyway, my prayers are with you always, keep on trucking, Martina! You’re strong and you’ve got this! Especially with Simon and the Spudgy (and the Meems! (=^w^=)) to help support you!

    10 months ago
  39. I understand very well that part about using spots for disabled and elderly people. I have heart condition and whenever i have to use these spots i feel guilty and afraid some social justice warrior will come to me and say what a jerk I am(。•́︿•̀。). I’m not a jerk, I swear(ó﹏ò。)

    10 months ago
    • I’m sorry you have to experience that as well. I’m hoping this video will make people think differently about disabled spaces and who has the right to use them.

      10 months ago
  40. Yooo, I’m happy that Martina’s back yasss. Hope everything goes well with the specialist in Tokyo
    Lots of lovee!!

    10 months ago
  41. http://www.japantimes.co.jp/news/2014/06/02/national/badges-invisible-disabilities-catching/#.V02JyZN96Rs

    Hello Simon and Martina. Do you know Japan has badge for invisible disability? It tells people that you have a medical condition, and is entitled for a seat if necessary. I think you should look into them, as I think it will make you fell less judged on. Japan also has badge for pregnancy. If you have any of these badges, people will be kind and offer you seat or help you in times of need, without you having to feel guilty and ashamed about it. And you shouldn’t, just because we are “sick”, doesn’t mean we are less deserving. Please be healthy and happy, hopefully you will find light at the end of the tunnel with the doctor appointment coming up.

    10 months ago
  42. I was diagnosed with Epilepsy and Depression (not trying to make a sob story just explaining my story lol) at the age of 11 and while they’re not always invisible illnesses I do understand what Martina is going through. I hope that if you read this Martina that you understand you will always, and I mean it from the bottom of my heart, always have a friend *points to myself awkwardly because being happy is who I usually am*

    10 months ago
    • Thank you friend! *internet hugs* My cousin has epilepsy and it only surfaced during her first year of university. She struggled with not being allowed to drive, drink, or go dancing (fear of the strobe lights) and participate in what felt like normal university events at her age which led her to depression. She is is much better now but it took years of dealing with these feelings of frustration and sadness. There are many of us suffering from invisible illnesses (IBS, Chrones, Anxiety) and I’m glad we can find each other online and give each other support.

      10 months ago