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I have Ehlers-Danlos syndrome, and this means it is extremely difficult for me to do even the simplest of tasks. I live with my mother due to my medical problems, and it is hard for me to do chores around the house. Washing dishes causes me pain, vacuuming causes me pain, doing laundry causes me pain — as you can guess at this point, everything causes me pain. I also get wiped out easily, so my energy reserves are almost always on low to empty.

Not being able to do these simple household chores makes me feel worthless, like I am some burden to those around me, or at the very least that I don’t contribute anything at all to my family. On rare occasions I do have enough energy to do things, and my overall pain is relatively low or controlled. I take full advantage of these times because I never know when I will feel well enough to do these things again. It could be days, it could be weeks, or it could be months.

 

The other day I was able to do what I consider a nearly impossible feat — I was able to mow the lawn. On this occasion I had to have help from my mother, so what would have been tantamount to earning the Olympic gold medal was more like earning the silver or even bronze. My point is that completing this ordinary task that most people might take for granted was a huge deal for me. Completing tasks like this is considered a big victory for me. I even count things such as opening a jar of pickles as victories. This may sound ridiculous to some, but unless you’ve lived with the pain and fatigue of Ehlers-Danlos syndrome, you have no idea what a big deal this is.

I try not to be upset when I can’t do chores or open jars. I try to let these moments go. Instead I choose to focus on the times I can do something and take them as big successes. I try not to compare what I can do with what other people can do. So what if mowing the lawn is not a big deal for someone else? For me, mowing the lawn feels like earning an Olympic medal, and this is the feeling I choose to focus on.

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Thinkstock image by Muenz

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It’s taken a long, long time to realize this. 34 years, in fact. But I’ve finally realized that when living with hypermobile Ehlers-Danlos syndrome (hEDS), chronic pain and mental illness… It is OK to have a day, or week, or month where all you do is cry.

I’m having a teary day today. Hormones are flying around, so I’m extra stretchy and loose. I feel like someone has suddenly removed the bolts from each of my joints. I had a massage on Tuesday, with one of the few therapists I trust with my body, and she told me my shoulder blades have slid round two inches from where she’d expect to find them. She confirmed what I already knew – my body is literally falling apart this week.

I am taking painkillers, but they barely even take the edge off. I’ve also recently acquired a rib that subluxes too. Quite frankly, even just my rib constantly popping is making my eyes water. Not always just with pain, but with emotion. I’m fairly sure most of my fellow hEDS family will know what I’m talking about – when you reach the stage where your body involuntarily cries.

 

Over the years, I’ve shoved this emotional pain away, with busying myself, eating it away and just plain trying to convince myself it’s not there. All of which, in the long-term, increases my pain in one way or another.

I am a positive person. Most people who know me think of me as a positive person. I greet my loved ones with smiles, even when I’m dying inside with pain (emotional or physical). But, quite frankly, the best way to deal with teary days is to let the tears come.

Cry, scream, wail if you have to. Grieve the new subluxing joint. Sob with frustration that this is not the life you wanted.

Depending on how long you’ve held the emotion in, when the tears start, it might be hard for them to stop. Especially if it’s been a week or so, I’d always recommend seeking some advice in case it becomes overwhelming. Talking therapy has done wonders for me. For example, it has taught me that the tears do stop, the feelings never last, that I can always try and find some positive in my teary days – I try to record this to help me on my next teary day. One of the most important things that therapy has taught me is that crying is not me being “negative” – teary days are not only OK, but often needed.

And then, when the tears are over? I re-adjust my crown (or my subluxed joint) and continue – continue to live a life I am proud of.

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Thinkstock photo via Tawatdchai Muelae.


A little over a year ago, I was struggling up the stairs at my twin sister’s place. Stairs are an obstacle I tend to avoid, and there are many days where it is simply impossible for me to climb them. With my dizziness and depth perception issues, it is hard for me to know where the steps are and I often follow the rises and falls of each step with the tips of my toes, since I can’t fully trust my vision. My body also isn’t very good at knowing where it is in space or in relation to itself, so depending on touch isn’t always entirely reliable either. And, oh boy, I do not want to accidentally miss a step and head toppling to my doom. Each stairway and each day is a different experience, a new challenge, a great unknown full of hidden dangers.

Once, quite some time ago now, I was struck by a bout of unexpected paralysis as I was making my way up the stairs to the kitchen. In a matter of seconds, pins and needles trickled down my spine, followed by a shaking and rolling of my eyes, and then a weakness and accompanying weight in my legs, dragging me down. I used my hands on the railing and the wall to slowly guide myself down to avoid the abrupt drop which was certainly coming. Hugging the stairs like a safety blanket, hoping to high heavens I wouldn’t fall, I did a body scan and realized I had lost all feeling and command of my legs, and could feel it spreading to my left arm. After nearly a half an hour of attempting to find my bearings amongst the pain in my spine and the vertigo and loss of vision surrounding me, I knew this would be a longer episode, and that it wasn’t wise to stay on the stairs. A housemate carried me down to my room in his arms, an ordeal as painful as disorienting.

 

Not every encounter of mine with a flight of stairs ends in such a fashion. Sometimes I’m the stair master, reaching the top so quickly that – once I’ve cleared the danger zone at the top – I break out in a frenzy of jubilation that only Donkey from Shrek can rival. The feeling of success and empowerment and this thankfulness I have for my body and what it can still manage helps me deal with the fatigue from the exertion of forcing myself up the stairs.

For me, going upstairs is far more of a challenge than going down. I can feel my heart pounding in my chest, feel the uncomfortable sensation of blood pooling in my feet and sense my head going all light and floaty, all while my hips, knees, ankles, and feet scream their opposition by sending pain signals and threatening to dislocate. Going down doesn’t cause the same kind of stress on my heart, and except for on extremely high dizzy days or pain days, I try to go down them as practice – I just have to be super careful not to dislocate something or lose my footing or balance. Of course, there are some days where heading downstairs is just as difficult and dangerous as going up.

But let’s get back to that moment with my sister. I’m about three-quarters of the way up the stairs, hand gripping the railing, heart pounding and head spinning. My left leg is doing its delayed response thing where my brain is practically shouting at it to get moving while it sluggishly responds; my toes turn inwards, as my leg, almost like a dead weight, slowly drags itself up to flop where it belongs, demanding a rest before moving on to the next step.

I take a deep breath and sway slightly. Then my sister, directly behind me, starts singing John Mayer’s “Gravity.” It’s a woeful wail with a tinge of playful sarcasm: “Gravity…is working against me.”

She doesn’t make it further than that before I hear a startled gasp – the unvoiced equivalent of “Damn it, what have I done?” I wish I could have seen the “oh shit” expression on her face as I felt her panic rising about being insensitive or rude. But I wasn’t upset or offended; on the contrary, I cracked up laughing. The laughter rolled through me and I had to steady myself by putting my hands down on the stairs, and then I burst out singing the rest of the lyrics.

It fit so perfectly.

Every day, every moment of my life with Ehlers-Danlos syndrome and POTS and my other health issues, I’m working against gravity, both literally and figuratively.

With the effects of my connective tissue disorder, gravity is literally pushing me down and pulling my bones apart. If I sit in a chair that my legs dangle from, I can see my foot slide away from my leg at the ankle, and feel the weight of my leg pull my femur out of the hip socket. I constantly have to keep strengthening my muscles to try and support my unstable spine, to keep it from collapsing under the weight of my head. Sometimes I have to actively think about breathing as I struggle against invisible forces that make it very difficult. There are days when resting in bed is both my dearest friend and my greatest enemy. Lying down provides some relief from symptoms like low blood pressure, palpitations, headaches, dizziness, etc. However, my joints are so loose that no matter how I position the pillows, simply lying there causes terrible pain as my bones slip around in response to their own weight. Something as simple as a handshake or a hug has the potential for causing multiple dislocations.

As for the figurative side of things, I’m trying my best to function despite all sorts of struggles that seem to push me in the exact opposite direction of where I originally planned on going. My health problems have challenged my ideas of what my career will be, my definitions of beauty and strength, my views of the world and so much more. A progressive disease takes bits and pieces of your life away from you, sometimes slowly, sometimes quickly, but no matter what, it is a sad and painful process that is hard in many ways.

“And gravity, wants to bring me down…”

Coming to terms with health problems and disability is a grieving process full of many farewells, such as bidding adieu to a dream career, late nights out, a favorite hobby, walking without mobility aides, tying shoe laces and so on. It is not necessarily pleasant and can include all the varying stages of disbelief, anger, bargaining, depression, reconstruction, acceptance, etc. One of the best things for me was finally reaching a place of acceptance, being able to finally be OK with what’s happening and not hating myself or my body for it. But that is a long process, one that often has setbacks.

“Dream of ways to throw it all away…”

No matter how accepting I’ve become of my chronic illnesses and related limitations, I have days where I am angry, where I wish my illness would just leave me alone. Sometimes I wish I didn’t have a body, or that I had a healthy body and could easily do the things I miss so dearly. But the truth of the matter is that such contemplations don’t really help me personally, and I’m happy to be here and be the person I am – I just have to remind myself of that every once in a while.

“It’s gonna send me to my knees…”

On a day where I fall or faint or am paralyzed, on a bad day that has me wailing, crying out and collapsing from the pain that refuses to be managed by any intervention, or on a day where I’m so dizzy I can barely function, I can feel like all of this is too much for me to handle. The unsteady progression of my illness and the switching back and forth between wheelchairs, rollators, canes and bed rest can be scary and demotivating. The cruel words of strangers who don’t understand invisible illness can sting. The financial burden of doctor appointments, tests and medications can be overwhelming. I can’t lie and say I am always hopeful and happy, because there are days that are truly difficult. But no matter what, I will not let this bring me down. It is hard, but I will not let this stop me from living life to the fullest that I personally can, and from being proud of who I am.

“Just keep me where the light is…”

Laughter like the delightful outburst on the steps with my sister helps to keep things bright. Dealing with my disease with humor is a tool I’ve come to love. Making sure to always try and find a silver lining is something I’m kind of known for. For me, that doesn’t mean ignoring the seriousness of a situation or brushing aside the negative aspects, but simply acknowledging there is some good, too, no matter how small.

All of us in this world have our struggles, our versions of gravity that seem to be bringing us down. We need to find the things that help to make that manageable for us, whether it is bursting out into song, finding someone to talk to, playing video games, writing poems, reading, being super goofy, whatever. I’ve found that acknowledging and sharing the burden is one of the best ways for me to move forward.

Before this lovely moment of song on the steps, it had been a while since I’d heard “Gravity.” When I was a teenager, dance was my passion, and in modern class we would often dance to that same song. It was usually to a combination of swings that played with our centers of balance, providing me with that exuberant feeling of weightlessness that I miss so terribly much. Now listening to this song on bad days, smiling and thinking of it when walking is a struggle, when my head feels too heavy to lift, helps to give me that feeling of flight again, despite what gravity throws my way.

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Thinkstock photo via Eloi_Omella.


I recently had the chance to view the live-streamed therapy session with Katy Perry. While I am not here to judge Ms. Perry in any way, I do feel there is something about the broadcast that needs to be addressed.

As someone who lives with a chronic pain condition, I really didn’t like something that the therapist, Dr. Siri Sat Nam Singh said. He spoke of how when people are inauthentic, they tend to somaticize their problems. This means that “symptoms will come in your body.” He went on to say that he has worked with many individuals with, as he said, “quote incurable diseases” who go to doctors only to be told there’s nothing wrong with them. The therapist then said being inauthentic puts you at risk for consequently somaticizing your problems and “creating symptoms in your body.” Based on my experience, I strongly disagree.

Jump to 38:30 to watch the clip:

Just because a doctor is unable to find something wrong upon examination, or even after doing multiple diagnostic tests, this does not mean that there isn’t something wrong. It also does not mean that the pain is purely psychologically based. There are many people out there who are struggling with very real physical conditions, and I believe having a professional do a live therapy session with a well-known celebrity, probably to be seen by millions, and say this does not help our case. In my opinion, it only adds to our struggle. Saying that we are somaticizing our symptoms and labeling us as hypochondriacs can actually make things worse for us and reinforce the assumption that we are making it all up, or simply looking for attention.

I have personally been struggling, as have many more, to get an official diagnosis for my condition, hypermobile Ehlers-Danlos syndome, or hEDS. This is supposedly a rare condition, but as I like to say, “it’s not rare; it’s rarely diagnosed.” The reason for this is that there are very few people out there, including doctors, who have knowledge of hEDS, largely due to lack of awareness. Some doctors suggest doing things such as meditation, cognitive behavioral therapy (CBT), taking antidepressants, etc., to help us manage our physical pain. While I am not saying this may not in fact help some, it doesn’t help everyone, and it doesn’t get to the root of the physical problem. Not everything that we feel physically is a manifestation of some inner psychological turmoil. This is why we are not taken seriously.

I, myself, have tried talk therapy, CBT, antidepressants that are supposed to be geared towards pain management, as well as meditation. I have yet to find something that works for me. And why is this? Because, contrary to the often popular medical opinions of doctors and physiotherapists, it’s not all “in my head.” It is a very real, debilitating, day-in-day-out physical condition with many co-morbidities that limits me in countless ways. The bottom line here is that in order to receive proper treatment, patients need to be taken seriously by their physicians and health care team.

Many doctors are unaware of the different syndromes out there that can cause chronic, widespread pain. Unfortunately there are also many more who are just unwilling to learn about them, or sometimes even to send us to another doctor that may know. They are essentially dismissing our problems and chalking it up to somatization. Until this stops happening, and doctors start listening to their patients and taking their complaints seriously, countless people will continue to suffer, and continue to feel invalidated and unheard. This, in turn, will no doubt lead to psychological distress. Maybe, in that way, the therapist had it backwards.

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“Honey, did your boyfriend tell you to get all those tattoos?”

It took everything I had to remain calm and polite in the face of yet another incident of sexism, misogyny and misplaced heteronormativity. Clearly this former coworker making this ridiculous remark didn’t know me at all, but that’s no excuse.

Instead of rattling off a diatribe about my queerness and independence, which would have likely left me seen as the loose cannon feminist around my place of employment, I did what many other woman are conditioned to do: force a smile and make a comment just snarky enough to soothe my anger, yet not too harsh to break the man’s fragile soul.

“I don’t have a boyfriend, and I get tattoos because I want them.”

I’m used to being mistaken for a straight woman. I’m used to men hitting on me then being completely floored when I tell them I am not interested in men. I’m used to them following it up with “But you’re so pretty!” or “Have you actually ever dated men though?”

Over the years, I’ve had to learn to deal with these interactions. I’ve perfected my facial expressions and my verbal responses. I’ve added bits of flare to my appearance and fashion through piercings and tattoos as a way to subtly showcase my Pride to the world. These things are mere annoyances, though, because in many ways, being invisibly queer comes with serious privilege. What I deal with is truly nothing compared to what so many other queer people, particularly trans-women, are forced to struggle with on a daily basis.

More recently, however, I’ve had to come to terms with the consequences of yet another type of invisibility due to another facet of my being I cannot control, and it’s made it a bit harder to cope with the isolation that comes along with it.

***

For years, I’ve been in pain. All day, I twist and pop my neck and shoulders, attempting to get them back into the places they feel they should be. I throw pills back every four to six hours trying to keep my migraines at bay. I come home at night completely depleted with just enough energy to shower and collapse into bed.

It wasn’t until a few months ago that a doctor was finally able to give me a diagnosis that explains my symptoms, though it wasn’t one I wanted.

Ehlers-Danlos syndrome (EDS) is a group of genetic, chronic connective tissue disorders caused by faulty collagen production. A physician diagnosed me with hypermobility-type EDS, which affects one’s joints, skin and intestines, among other things. In a nutshell, my collagen is not produced sufficiently, therefore my ligaments are too stretchy, causing my joints to be unstable. My muscles then have to do all of the work, resulting in constant spasms and knots. My skin is also fragile as a result of my condition, making it difficult for any wounds to heal properly. EDS also causes chronic fatigue and headaches, two symptoms that are incredibly difficult to manage. But even with all of our varied symptoms, on the surface, most of us with EDS appear “normal.”

 

Every single person’s EDS looks different. It manifests in countless ways, which is one of the reasons why it is one of the most under-diagnosed medical conditions. Even my physical therapist, who I now have to see twice a week to try to strengthen my overworked muscles, was shocked when I told her my diagnosis. Very few doctors and other professionals ever actually meet a patient with EDS face-to-face. They mostly just read about us in books, and that’s only on occasion.

While in medical school, students are often told this simple phrase to help them diagnose patients who present with odd, multi-faceted symptoms: “When you hear hooves, think horses – not zebras.” In essence, this means that most of the time, patients’ complaints are the result of a common problem, and doctors shouldn’t jump to rare conditions. However, there are far more of us zebras out there than people, even doctors, realize.

This lack of awareness about our condition and our mere existence adds even more trauma to the struggling so many of us already experience. Anyone dealing with an invisible illness knows how isolating that can be. Constantly trying to explain ourselves to our doctors, our friends, our family members and our coworkers is exhausting. Being told we have no reason to be tired or that we are probably just exaggerating is hurtful. Having people “compliment” us by saying, “You don’t look sick!” is demeaning.

Many people with different conditions and disabilities often have physical difficulties with doing even the simplest things. For example, I am no longer allowed to lift anything of any weight above my head. It’s also very taxing for me to do things like make my bed, take out the trash, hold my niece, etc. Although I don’t look “disabled” on the outside, my body fails me on a consistent basis.

For those who don’t know about my condition, I can come across as lazy. But that’s the farthest from the truth. I crave to return to the time when I could clean my apartment without being in pain for days; when I could carry my groceries from my car to my house without having to stop halfway to rest; when I could go to the gym and lift weights and jog and sleep and breathe without crying. If I could run a marathon, I would.

Judgment from others is an extra burden many of us unfortunately have to bear, and it’s something I am having to get used to.

No one should ever have to explain or defend their chronic condition or their disability to anyone, just like no one should ever have to explain or defend their sexual or gender identity.

And although I am in the early stages of accepting the chronicity of my disorder and the stares and comments from others, I know I must stand just as strong with it as I do with my queerdom.

I was already in the closet once before in my life, and I am not about to go back in it.

In some ways, it makes sense I have this condition that is so varied and difficult to pin down. That’s me in all of my infinite queerness: unidentifiable, perplexing, ambiguous. Those are things I actually like about myself, so now I just need to learn how to make peace with it in regards to my illness.

I am proud to be queer. And I must also learn to be proud to be a zebra, even if no one hears me and my hooves coming.

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Thinkstock photo via Transfuchsian.


Last night “America’s Got Talent” shared with the nation an inspiring story of a young singer. A 29-year-old woman named Mandy Harvey took the stage and blew the judges away with her story and profound talent. Before she played her song, she explained to the judges that despite being deaf due to a connective tissue disorder, she has managed to make a name for herself in music.

This story hit me harder than most other viewers. Not only did I sit at home watching with a connective tissue disorder (I have hypermobile Ehlers-Danlos syndrome), but I also was watching as an EDSer with almost complete hearing loss.

Ehlers-Danlos syndrome is a very complex condition. This syndrome affects the formation of healthy collagen, and collagen makes up half of your body. This condition not only causes bendy joints or stretchy skin, but it causes complex issues in multiple systems of the body. Not many people realize that connective tissue disorders like EDS can cause issues such as hearing loss, but Mandy stood up on that stage and told the world the truth about connective tissue disorder. She told her story and shared her love of music in a beautiful way.

I sit here writing this article blaring music, trying to hear the beat. All day I have been reading lips and asking people to repeat themselves as I honestly can barely hear anything. While my hearing loss is caused by buildups in my ear rather than nerve damage, Mandy’s story hit home. Her song and story made me feel less alone on a day when I felt like an outsider.

Hearing loss is hard to deal with. Whether it is permanent or temporary, not being able to hear what people say is nearly impossible. I was fortunate enough to have learned how to read lips in the Sign Language Club that I started at my school, but most people do not have this useful skill. Even being able to read lips, I still miss a lot. I miss small words, side conversations, and most music. It is so incredibly frustrating to go around the world only catching half of everything that people say. For this reason, I am so incredibly grateful to hear about people like Mandy who have overcome hearing loss.

Thank you, Mandy, for being brave enough to share your story on national television last night. It is people like you who give all of us with connective tissue disorders the strength to push through another day. Your story reminded everyone that it is a complex condition. It’s not all dislocations and bruising, but there are also other issues such as hearing loss. Thank you for bringing awareness to our condition, spreading your music with the world, and showing everyone that they can overcome any challenge.

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