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 cain 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 was 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 terror.

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. It might look like I’m pouring my heart out here, but you’re just really seeing a fraction of the surface. 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 in 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.