Misunderstandings, Coping, and Invisible Illnesses

Warning: This is going to be a personal rant. Absolutely zero book related content.

The other day a complete stranger said to me, “Why do you need help with that? Are you lazy or something?”

That comment hurt a lot more than that woman will ever realize. The sad thing is, I get a variation of that sentiment far more frequently than you’d ever guess. It’s nothing new, and every time I hear it, it hurts.

I’ve had joint problems most of my life. I was born with a dislocated hip, and when I was a teenager I learned that I was severely hypermobile. That’s when my surgeries started. Due to my incredible joint flexibility, I had to be pulled out of all of my physical activity like gym, and competitive swimming (I was very, very good). My activity started to be limited. My doctor told me that under absolutely no point in time was I ever allowed to run. By seventeen all I was allowed to do was walk and ride a bike. There was just too much risk that any strenuous activity would cause me to blow a joint and I’d need more surgery. I started my lifelong relationship with physical therapy.

Time goes on.

My condition, which was annoying at first, degenerated with time. It started getting really, really bad and absolutely debilitating about ten years ago, and has progressed since then. I’d go to one doctor and then they’d say they had no idea what to do, and send me to another. I’d have one surgery to fix this shredded joint, and then another surgery to fix that shredded joint. Neither of the surgeries would work as expected, so I’d have to go do the whole thing over again. My spine did its thing, I lost the ability to walk for a while, and spent a few months learning how to walk again after three spine surgeries. I still have a cane for those bad days, and just-in-case. I learned that my bones were deteriorating, and my hypermobility had been moved from “hypermobility” to “chronic joint hypermobility.” Other than that, it’s pretty much been a life of physical therapy, more and more physical limitations (I am now forbidden to do pretty much anything but walk slowly on a safe, flat surface), and a lot more surgeries, but no other real answers. Just symptoms and limitations. Lots of them, and all the mental funk that goes with them.

My last shoulder surgery was supposed to be the surgery to fix all of my problems in that joint. It apparently worked for everyone, and it was the absolute endgame that would set me free (from that joint problem, at least). It was my eleventh joint surgery, but since it had been praised so highly and research showed that it indeed did have fantastic outcomes for patients, I didn’t mind. Cut me open and do it. Let me move on. Please. I just wanted to have one health riddle solved. Just one.

I let myself hope. That’s probably where the fault in all this lies.

The surgery didn’t work as expected. In fact, I went to my doctor a week ago (the only one left in this damn state who isn’t terrified by the riddle I present them) and he kind of threw his hands up in the air and said, “I haven’t ever seen anything like it.” Those are the last words I ever wanted to hear. Another surgery is already planned, though I am going to try my hardest to put it off a few more months. My doctor was absolutely baffled, and asked for permission to share my case with his colleagues. I signed a bunch of papers releasing my case (which is H-U-G-E by the way) to him and the doctors he chose. Then I drove home, and cried.

And cried.

And cried.

There were no answers, and it is absolutely terrifying to hear your joint specialist tell you that he is completely confused. I’m young. I have a whole life ahead of me. If my doctors are already giving up on me now, what does that say for my future? It’s terrifying, and I’m already terrified. I don’t know how long I’ll be able to walk. I don’t know if tomorrow I’ll wake up and my spine will do whatever the hell it does and this whole relationship I have going on with my legs will be over. Again. I don’t know if I’ll move the wrong way, and another joint will blow, and I’ll be in for five more surgeries because the first four won’t work. And knowing that the guy who specializes in all of this had no idea…. it pushed me over the edge.

And the pain. I am so incredibly tired of hurting all the time. It’s emotionally and mentally draining. My bones click. My joints dislocate or subluxate all the time. It hurts like holy hell. When my bones rub together, it hurts. It hurts a lot. I have these constant aches from all this stuff that sometimes reduce me to hopeless tears. Sometimes I can’t even work because I ache so profoundly. I never know if this day will be a good day (with only a moderate ache) or if I’ll wake up screaming. I don’t know if this will be the day when another joint just decides to let go and things dislocate, or if today all my bones will just rub together a lot and set me on edge. And working in close quarters with someone always makes me want to apologize. I just want to say, “I’m sorry my body is so loud, and things click and grind so audibly. I know it’s disgusting. Just hum a lot and try to ignore it. I can’t help how gross I sound every time I move.” I think about living the rest of my life with this kind of pain, and my heart squeezes with an emotion so powerful I can’t even put a name to it. Chronic pain is nothing to shrug at.

Admittedly, dealing with cancer stuff at the same time doesn’t help with the emotions, but this is something different. Cancer is silent. This is so loud (to me) and it is changing so much right before my eyes.

Today I talked for a long, long time with my doctor, who had been having extensive meetings with various other doctors of various specialties with joint related issues, and they all decided I need genetic testing done for Ehlers-Danlos Syndrome Type III. My doctor was almost embarrassed that he hadn’t thought of it before, but he said he’s been so close to my case for so long that it took new eyes to see what was right in front of him. I hadn’t ever really even heard of it before. Well, I’d heard of it but I never attributed it to me or really looked into it. We talked at length about symptoms, and he got a lot of information from me. He gave me some stuff to research and passed my information, and the 18ish years of clinical joint issues I’ve had on to the geneticist who he has apparently conscripted to working my case and doing whatever it is that those people do. Apparently they are starting their research, and I’ll be getting a call soon from them for more information. My doctor said he thought it would be a “miracle” if I wasn’t diagnosed with this. My issues have been so varied and nebulous, and so long lasting it feels kind of surreal to maybe have a name for it after all this time.

It sucks, but at least I’ll have an answer to the riddle of my body.

The worse this thing gets, the harder it is for me to deal. I can’t move the way most people move. I have to be very careful with myself. The smallest activity that most people might not even notice can hurt me to the point where I need surgery to fix it, or it can put me in bed for days, or I’ll end up in the hospital. The constant pain is grating, but no one really sees those things. I hate having to explain why I can’t do things to people. I look like I should be completely capable, but I’m not, and I hate justifying myself. I hate the looks I get when I have to ask for help with something simple, and people don’t think I should need that help. I should be able to lift that light box, right?

Please don’t look at me weird when I can’t do what is considered “normal.”

It’s those looks. They wound.

And that’s just the surface stuff. I’m angry. I’m so incredibly angry, and I don’t even know who I’m mad at. I’m just mad right now. I hate not having the options. I’ve never been much of a hiker, but I enjoyed having the option before. At least if I wanted to learn how to climb a mountain, I could. If my family is doing something physical as a get-together, I have to beg out. I’m not being anti-social, but that’s how it comes across. I hate that. If I leave work early due to pain, people think I’m lazy. They don’t see all the pain that is going to force me to lay on a heating pad for hours and hours. I hate spending so much of my time worried about the next joint blowing for no apparent reason. I’d love to live through a calendar year without surgery. I haven’t had that luxury in… wow, I don’t even know how long.

I am complaining, and while I am facing these issues I realize how lucky I am. I have a house, a kid, a family. I laugh a lot, and read a lot. I have hobbies and passions and food in my belly. It could be worse. It always could be worse.

But the future is so uncertain, and that terrifies me. There is no cure for this. It’s degenerative. I’ve known that for years and years, and those years and years have proved all of those doctors and their fancy words right. Things just get worse as time goes by. I’m in my early thirties now. I try to picture what I’ll be like at fifty, and I want to scream with fear.

Any disabling condition is hard, but I’m having such a hard time dealing with how invisible this is. People can’t see what’s going on under my skin (that’s true for anyone, really), and so much of this I try to keep so quiet because people wouldn’t understand. Being labeled “lazy” is easier than having to explain why exactly I cannot lift that box that I should probably be able to lift. I look “normal” so I should be able to do “normal” things, right? And when I can’t, I get that look. It hasn’t really struck me before now how much of our language disparages everything outside of what we define as normal and how that’s such a large part of how we act toward others.

It’s easy to make assumptions about people.

Words have so much power.

This is, maybe, just a tiny window into one person’s experience. I debated on whether to post this or not, but I figured that maybe if I opened up a little bit, it might help break down some of the stigma that surrounds people with invisible illnesses, or illnesses in general, really. There is so much misunderstanding, and so many hurtful words that we don’t even realize hurt. It’s part of how we live and work. I’m not incapable. Yeah, I need help with some things, and I’m limited in a lot of ways, but I’m not incapable, and I’m certainly not lazy. It takes some ingenuity and a ton of effort to accomplish the things I accomplish each day. You just don’t see that, because it’s quiet. It’s under the surface, just like everything else.

It might look like I’m pouring my heart out, here, but not really. In reality, this is just the barest fraction of the surface, and this is probably some stuff that so many people can relate to. The point is, I’m not alone. Everyone has a story, and we never know what that person’s story is.

I’m not asking for pity. I don’t want any. I just wanted to tell a little bit of my story because maybe, just maybe, it’ll help someone else. Maybe you can relate to me. Maybe it’ll change how you see others. Maybe you’ll think this is stupid. Whatever. Sometimes I just have to let it out.

Writing is one of the ways I cope and try to understand powerful emotions, and you better believe I’m going to write the shit out of all of this in stories and various other projects. My life has been turbulent for the past few years, and I’ve had back to back health issues. I’m stronger because of it, and I think, in a lot of ways, my health problems have made me a better person. I’ve learned that I’m a lot stronger than I ever expected, and I love life a lot more than I thought I did. Not all things are bad, but things are hard, and that’s okay. Sometimes it’s the hard things that show us how bright the world really is. There are good people out there all around us, and kindness is always happening in small and large ways. There are always helpers, and there is always magic.

So yeah, I’m complaining, but in the midst of all of this, I want to point out that despite it all, the world is still a beautiful place and I love being part of it.

And now this is spiraling and going nowhere really, so I’ll leave it here and post it before I chicken out.

24 Responses

  • Thank you for being brave enough to share this, to bare your soul about you are going through, Sarah.

  • Hello! A friend mentioned your blog post and I came over to have a look. I have hypermobility-type Ehlers-Danlos Syndrome, and have a constant struggle with dislocations, bruising, and injury. There are several online support groups, many on Facebook alone. Sometimes, it just helps to know you are not alone. There are many of us in this boat. I have had injuries from this condition my entire life, and it runs in my family, yet it took me years to find a doctor who knew enough about it to give me the formal diagnosis. I know that there are days when it feels so overwhelming to think that there isn’t a cure, but we do have a thriving online support community (which is great since many of us can’t get out much). We call ourselves zebras, and our awareness ribbon is a zebra print. This is because doctors are taught “when you hear hoofbeats, think horses, not zebras” – there are so many different aspects of EDS that are tied together, and it presents differently from one person to the next. You are not alone.

    • Jenifer,

      In some ways this diagnoses feels great. I know that’s horrible, but at least now I know I’m not crazy or making all of this up. At least it has a name. It has no cure, but a name helps a lot. It gives it a shape and a form, and that’s hugely helpful. My joint stuff… I’ve been struggling with this my whole life, and it’s completely and absolutely SURREAL that I’m not alone. A weight has been lifted. It’s is so baffling to see “You’re not alone” or “I get it” rather than that weird look and a curious, “huh… strange.”

      I’m looking into support groups online. I think that will help. Even the comments on this post have helped immensely. This syndrome sucks, but I’m not alone, and that’s so nice. Such a huge relief.

      I appreciate your comment. I hope we can continue to chat. It looks like I’ve already pretty much been living with EDS I just haven’t known it…

  • Cindy Frolund

    Hi there, I just wanted to let you know that I understand exactly what you’re going through because I have Ehler’s Danlos Syndrome Type 3 Hypermobility as well. I could relate to everything you wrote and certain parts were eerily close to my own story. Well, I don’t want to get too into my case at the moment, but I want to let you know that you are not alone, and if you need someone to talk to about all of this, I would actually be honored to be one of those people for you. Feel free to find me on Facebook if you are interested. Either way I wish you well on this journey, with the right diagnosis and treatments and talking about it with people who can give you the right advice, you do have a really good chance of improving your condition. I’m feeling better than I have in years! I would love for you to have that feeling again too. HUGS 🙂

    • It’s wonderful to know that things could actually get *better*. That’s a hope I gave up on a long time ago. Better would be fantastic. It’s really nice to know that people out there understand. I’m so used to not talking about these joint issues because no one gets it, because it’s “weird.” I wrote this not expecting anything, and having a bunch of people say, “I get it” or “I relate” is such a profound relief.

      I will look you up on Facebook. I am anxious to talk more with people who have been-there-done-that.

      Thanks for reaching out to me. I feel less lost now.

  • Audrey

    A hug to you, from a fellow EDSer. I am in the process of seeking my “official” diagnosis from a Geneticist. Please know that you are not alone. I am a member off EDS Zebras Unleashed on Facebook, and I have found support groups to be my sanity on those days when so many around me do not understand. Wishing you peace and strength!

    • Thank you, Audrey! This diagnoses part is grand fun, right? I kind of wish all the hurdles could be jumped so I can just get on with it.

  • Jaime Lee Moyer (@jaimeleemoyer)

    Sarah, you aren’t complaining. You’re telling people about your life.

    And seriously, those people who give you grief about not being able to do something, or lift something? I’d like to smack them. Or better yet, have them live your life for a day and see how they cope.

    Chronic pain is exhausting. That you function as well as you do, and maintain this website, is a testament to what a strong person you are. I admire your courage and the way you handle all the crap life throws at you. I really mean that.

    Until a few months ago I’d never heard of Ehlers-Danlos Syndrome Type III. If that does turn out to be your diagnosis, you’ll be the second woman I’ve met online via other writers that has this syndrome.

    You have all my best wishes, hopes for strength and courage, and I hope the terror recedes, even if just a little. Life is uncertain for all of us, but you’ve gotten much more than your share. I’d fix that if I could.

    • Thanks, Jaime. I appreciate your heartfelt and kind comment. It’s nice to know that I’m not alone.

      • Jaime Lee Moyer (@jaimeleemoyer)

        I tend to get all mother bear and hyper protective of people I like. Having lived with chronic pain and associated fatigue since I was 28, I also get–impatient–with people who assume that not being able to do something equals being lazy.

        You’re not alone.

  • vicki

    Im glad you have the ability to put this in words. After a lifetime of live with chronic joint dislocations and several surgeries and born with a hole in my heart and heart murmur, i finally had a physical therapist tell me im hypermobile and a geneticist diagnose me with EDS Type 3 with vascular complications at the age of 35. Ten years and 7 more surgeries later, the degenerative effects have only gotten worse but im glad i have a name that i can give to people and unknowledgible medical personnel so they dont have to continue thinking im lazy or a hypochondriac. Its real and debilitating. Even words have a hard time describing what we are going through or how we are feeling. You arent alone though. There are alot of us out there. Alot more that have all the symptoms and pain but still not a name. Theres no cure. It took your dr (like so many others) so long to figure it out because theres very little being taught about EDS in medical or nursing schools. At least one type of EDS as a mortality age of 48 yrs old. But apparently that and the debilitating pain isnt important enough to educate the medical community. So the patients have to educate ourselves and our drs.

    • Writing has always been one of the only ways for me to cope with things, and mentally process what is going on. It sounds like you’ve been through absolute hell. I hope things even out a bit for you. I think its kind of amazing that I (and apparently almost everyone else) deals with this for so long before we get a name stuck to it. You’re right, it’s hard to constantly try to convince people that you aren’t making it up. That’s another emotional drain on top of the emotional drains already there.

      But wow, your story humbles me, and amazes me. You are a very strong woman. Thank you so much for sharing a bit of yourself with me.

      • vicki

        Honestly, this life seems normal to me now. I hate the pain. I hate how it has changed me. Thank you but i dont feel very strong. I feel weak, physically and emotionally. I guess thats what pain has done to me. As a kid and teenager i thought the dislocations and joint pain were normal. It never occured to me or my parents to have things checked out. I wasnt physically active in sports so im not sure knowing what was causing the symptoms would have changed how i grew up. I was an optomistic person.

        The last 10 yrs have been different. EDS has had a huge impact. Knowing has helped me understand what is happening to my body. Its helped me understand what my youngest is going through (i have one daughter with eds, one without) and help her with her symptoms. Some days, people that dont know me probably wouldnt know the amount of pain im in. Ive learned to cover it up with a smile. Eventually, i cant control my outward appearance. I have to be by myself so i dont take it out on other people, so they dont have to see me feeling that bad. They feel as helpless as i do.

        As bad as all this makes me feel, i dont know if i could live with it and cancer… much less while being pregnant. I cant imagine what you had to go through. The idea truely leaves me speachless. I hope everything goes well for you and your family. Please keep writing. There are so many people that can be inspired by your story.

  • *big hugs*

    Welcome to the Spoonie family. Most people with EDS call ourselves zebras because we all have heard stories like this. If it sounds like a horse, doctors look for a horse, not a zebra.

    Know that you are not alone. There is a very active community (especially on Tumblr) for people with Ehlers-Danlos Syndrome. I was diagnosed with Classic Type II when I was in my teens because my baby cousin was taken from her parents after accusations of abuse. She spent her first three years in foster care and was “abused” by seven families before they realized the bruising wasn’t from abuse but from Ehlers-Danlos. It was heartbreaking.

    Most days I can forget I have EDS, making me one of the lucky ones. I can do sports (although my doctor cringes). But I can also dislocate my shoulder rolling over in bed. I’ve skipped the surgeries and become very good about putting joints back in place.

    Then there are the bad days, the flare ups, where the pain makes everything burn and my joints are on fire. My spine likes to slip out of place sometimes and makes it hard to breath or move. I’ve woken up in pain thinking I was being stabbed only to find a dislocated joint was pinching a nerve and I couldn’t move.

    And most people you know will never know you have EDS from looking at you. I spent three months with my ankle in a splint after pushing too hard at a workout and the comments were abusive. You don’t look physically ill. You look healthy, happy, and normal. No one can see the pain. No one else but your fellow zebras and spoonies see the dangers in simple activities.

    *more hugs*

    If you ever have questions or want support, let me know. I have four kids who all have EDS and I advocate and educate for them. I’m more than happy to help you get the answers you need and help you navigate this. You’ve already been living with it, now you have the name. From here, it all gets better.

    • I have one kid, and I’m kind of terrified for what this means for her, if anything. She’s already being screened for cancer (I had cancer when I was pregnant with her), which appears to be strong in my family genes, and now this. She’s only three, so there is time to wait, but still. I worry. I’m a mom. It’s natural.

      The nerve pain is what gets me the most. I’ve completely lost feeling in my right leg from the months my spine was out and I couldn’t walk. You could stick a butterknife in it and I wouldn’t know. Physical therapists had to teach me how to walk again by teaching me how to judge the pressure under my toes. While I can’t feel the rest of my foot, or my leg, I can feel my toes. That’s the *only* reason I can walk.

      But the dislocations and the nerve pain that comes with them is indescribable if people haven’t felt it before. You’re right, it’s like being stabbed. I’m pretty good at popping my joints back in myself, the problem is the stupid things keep dislocating and subluxating and it drives me absolutely insane. Which is where the surgery comes in. If I’m lucky, a surgery will last me a good part of a year before the joint starts to act up again. But it’s an emotional rollercoaster. I know that the surgery wont work long, but I still hope that it’ll be the miracle surgery that will fix that problem, and when it never is, I still feel disappointed.

      And yeah, the comments that I get can really hurt, and I never expected that, either. It’s bothered me more these past few years, because these past few years things have become worse and worse. I don’t think people realize how much those backhanded comments that they might chuckle over can really cut… and the assumption that I’m not doing (insert thing here) because I’m lazy is really annoying. But you’re right, this is an invisible thing, and people don’t know, and I don’t generally take the time to educate them. It just bothers me. That’s fine. No one is perfect. Whatever. In the scheme of things, that’s pretty small.

      But it is so nice to know that I’m not the only one who feels this way. So very, very nice. Thanks for reaching out to me.

  • Barbra

    welcome fellow Zebra! You’re not alone, your story is our story and we are all here to support each other. Gentle hugs!

  • Thank you so much for being brave and posting this. While I don’t suffer from physical maladies like you do, I can relate. I have mental ones that damn near cripple me on a daily basis. Knowing that you can get through your day helps me get through mine.

    Also, I had to stop reading this about 2/3rds the way through. Not because I didn’t want to continue. It was to clear my eyes from the tears blinding me. Tears that came with tons of mixed emotions. I can feel your pain and frustration coming through your words, but overriding all of that is the courage to stand up to it all and continue doing the great work you do.

    Thanks for sharing all of this.

  • WHM

    Best wishes for more definitive answers and maybe even some better course of treatment/therapy etc. leading to a better quality of life.

  • *hugs* Sarah I seriously feel for you. I was just reading this while trying to get comfortable sitting in my desk chair because my pinched nerve has gotten so painful that I can barely walk. Walking with a cane helps the visibility a bit for me and I feel very lucky to have coworkers who are very understanding when I decide to wheel around in a desk chair instead of walk >.>. While I don’t know exactly what your experiences are, I am very impressed with your resilience in the face of chronic pain since I do know how devastating that is. My doctor keeps reassuring me that there are more treatments we can try, but he has also been frank that he doesn’t think I’ll ever be pain free. When I’m in my twenties and joking with women in their sixties about back problems, I get a bit worried for my future as well, ha. I know exactly what you mean about finally not feeling crazy though, when I finally got an MRI and confirmation that my pain wasn’t something that everyone dealt with, I was able to pursue treatment more confidently since I had proof that I wasn’t just a weakling. I think an online support group would definitely be a good idea though since there are probably specialists that are more able to help you outside of your state :-/. In any case, much love and thank you for writing this.

  • L. Jagi Lamplighter (Wright)

    You are so very, very brave! I am always so impressed by how spirited you are, in spite of it all.

  • Thank you. Though I can’t say that I can relate entirely to what you’re going through, I can definitely relate to some small degree about hearing the ignorant comment on what they don’t understand. You’re going through something that affects your entire life, even if it doesn’t show on your skin, and people will always be thoughtless and assume that you’re perfectly able-bodied, unless they’re going the other way and assuming that you can’t do anything at all and are useless. Which is wrong on both counts, and believe me, there is nothing wrong with pitching a rage fit over unjust treatment. This stuff is worth complaining about, if not just to get it off your chest then to educate others so they don’t make the same mistakes.

    You are a wonderful person, and that will never change.

  • As somebody who deals with “normal” chronic pain; who can’t walk very far, stand very long or lift any weight without fear of aggravating my back or shoulders, I salute you. Your condition makes mine seem like child’s play.

    Even though my conditions are not as severe, I’ve frequently been in the position where I had to ask store employes or complete strangers for help. Most are courteous, some are not. It is humiliating enough without the inconsiderate remarks or strange looks.

    I even get evil looks for parking, legally, in a handicap spot. It’s my roommate’s tag, and yes she can walk but it hurts to do so. You don’t need crutches, a walker, a wheelchair or even a cane to be functionally disabled. And yet… you’d almost have to be in a body cast for people to believe there is anything wrong with you.

    It’s sad, it’s wrong and it’s unfair but I believe in karma. Someday those same people will understand and regret.

    I admire you with every fiber of my being. Forget about the ignorant folks. Karma will exact its due :>)

  • As a fantasy writer and an advocate for people with disabilities, I can empathize a great deal with what you’ve written. While I experience chronic pain from fibromyalgia, I know that doesn’t compare with your experiences. My son, however, has baffled therapists for a long while now. He has a diagnosis of autism, but nothing ever really seems to work to keep him regulated. They do what they can, but they’ve given up on finding any real solution. It’s a lousy place to be to have a body you can’t control and the professionals who are supposed to help you say, “I don’t know what else to do.”

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