Young woman climbing stairs.

I live life along a very fine line between concern and constraint. I have to think about every single move I make. If I step this way, my ankle may “react badly” and then I won’t be able to walk for the rest of the day. Or if I try to chew something like a
carrot, my jaw will ache to the point where I stop eating for several hours or
resort to soup only. That is my life with Ehlers-Danlos syndrome.

I can read my body better than I can read a book. I notice when the slightest thing is off. I can predict when the evening is going to be particularly difficult, depending on how I feel when I wake up. It is a delicate science, but it is also a very useful one. By knowing these things about how my body is functioning, I can decide when I can push the boundaries a little more. I can decide whether it would be too much for me to go up the next flight of stairs, or if I should go look for a lift somewhere. It allows me to really live.

Knowing about my illness can be quite worrisome, because as much as I can judge, evaluate, and predict, the reality is that my body can change its tune in a second and that means I always have to be on my guard. It also means that my loved ones are on their guard. My family and myself are always navigating “the road less traveled” so no
one will accidentally knock into me and I won’t be able to keep my balance, or they might accidentally step on my foot or my shoe and cause the bones in my feet to separate. It is a delicate dance of avoidance while also trying to do things that will later on have me aching to the point of immobility.

This can look weird to outsiders. I always move toward the right-hand side of a staircase, because I need the railing and my left arm is more unpredictable. I’m always walking towards the back of groups or desperately searching for a lift or escalator. This is what you have to do when you are always avoiding injury. Once, my brother stopped someone from hugging me because they hugged him first in a vice-like grip and he wouldn’t allow them to jeopardize my ribcage. This sometimes makes people look at me and my loved ones a bit funny or think of us as over-protective or overreacting.

If they were with me for any period of time, I hope they would see that everything we do is because we have to  — not because it’s fun. It isn’t paranoia or over-concern. It is finding a way to keep me moving forward and not staying stagnant.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Serpe Blu.

RELATED VIDEOS


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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Muenz


The waiting room in the neurosurgeon’s office resembled the aftermath of a minor bus accident – minus any visible blood. A novice might have mistaken it for an ER.

A half-dozen young women are wrapped in neck braces; one sits in a wheelchair as her husband caresses her hair. A 20-something (initially upright, but winds up on the floor) injects her veins with several medications that she pulls from a large bag at her feet. Her mom, a nurse coaxes her along. Three hours in waiting, I offer my seat to a severely underweight, frail looking girl, then toss my back pillow on the floor where Miss Injectable fights to get comfortable. These are the faces, and bodies of Ehlers-Danlos syndrome (EDS).

Within minutes of arrival, we trade war stories, compare medical histories, share injustices and point one another to additional resources and clinicians. Surgeries are ticked off like menu times, many have had dozens. Empathy is rampant. We legitimize, validate – though no explanations are needed.

When I was offered a snack by a fellow EDS’r jeweled with six finger splints, I couldn’t open the package. I assumed she couldn’t either so I automatically slid the box to her mom, we all laughed. No words needed. There is rarely a shortage of humor to keep us occupied, bring much-needed levity, and infuse us with best medicine money can’t buy.

The newbies, there for an initial consult, either sit back quietly and observe, tune out with ear buds, or hang on to our every word. There is visible concern, curiosity and… hope. My motto: always leave folks with hope. There is plenty. We, the groupies and self-appointed welcome committee set the stage for ‘the man.’

His Majesty: The charming, over-extended, world-renowned neurosurgeon and EDS expert, Dr. H. He is worth his weight in gold. People affected by puzzling, debilitating symptoms travel from near and far for his help. Many are desperate, hanging on by a thread. Countless lives have been resuscitated and restored by this compassionate, extraordinary man. Bonus, he seems to get a kick out of the pop-up scene scattered in his kingdom.

Bleary-eyed patients leave their appointments with a familiar look of glad that’s over and gratitude. Some will deal with a new diagnosis of EDS and related disorders, others were there for surgical follow-up and many will require additional surgeries. We nod, sigh, offer smiles of support and pledge to be Facebook friends.

This strong, determined group of individuals, brought together by unseen forces and held together by our fearless leader, is simply awe-inspiring! So glad we get to cross paths.

First seen on Patiently Well.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: gpointstudio


I am a part of a few online support groups for some of my conditions and I have begun seeing a trend in our healthcare system. It down right scares me. The way patients with hard to diagnose or rare illnesses are being treated is appalling.

I have hypermobile Ehlers-Danlos syndrome (hEDS) and Chiari malformation. Even though I have been diagnosed by a knowledgeable medical doctor, I am still getting doubted wherever I go. I feel like because there is not a lot of knowledge or updated information on these illnesses, doctors are doing and saying things that can be hurtful, harmful and rude. Situations like these can be harmful to the mental health of these patients or deter them from seeking emergency care.

When I was young I watched my mother get told for years that it was “all in her head.”  I know better now, I just wish she was around long enough to experience that justification of a proper diagnosis. During this whole process of trying to figure out why I was so ill, I saw so many doctors. For over 10 years I was sent to different specialists and had tests run. When most came back normal, I started to doubt myself.

Somewhere along the line I have developed medical anxiety and medical post traumatic stress disorder (PTSD). When I go to a new doctor, I start sweating and my heart races. It takes every ounce of restraint not to get up and leave. Some of the things that doctors have said to me are almost laughable if we were not talking about my health and well-being. I should not fear going to the doctor. I should not be scared of what they are going to say or put in my chart. I once had a rheumatologist (who never even touched me or run labs) tell both my referring doctors that there was nothing wrong with me, I was just depressed.

Then he said that the lab work I had done with my primary care were false negatives. Two months later I was diagnosed with hEDS and Chiari malformation. I am still working to get my medical record amended. I have read so many threads on my support groups about things like this happening. Most patients will not even go to the emergency room at all, and I have gotten to that point myself.

I have been treated like a drug seeker when I have gone in for migraines. I have been treated like I have a psychiatric issue when I go in for chest pains. I also have basically been accused of lying about my condition due to the above doctor’s note in my chart. Then this ER doctor recommended a test that is not even a real thing for my condition. I am just appalled that I know more about my condition than the medical professionals that are trained for it.

When I find a good and kind doctor who is knowledgeable about my conditions I hold on to them. I actually do have a few.  Those are the ones that I deal with on a regular basis. When I meet a new doctor I never know what is going to happen or how I will be treated. Which is why when something like this happens now, I report it to the patient advocate. I have decided to take a stand for my own health. I have decided that I am going to say that this is not OK!

Recently a local hospital did a CT of my head and told me it was clear. Then, a few weeks later, I had an MRI that showed a tumor in my head. When I went back to look at my results, it was there, it just was not relayed to me. Guess what? Patient advocate got a call. I was contacted the next day by a hospital administrator who was a doctor himself. I was actually quite impressed with his concern and care in this situation.

This is obviously a problem that is becoming more common. I really wish there was some way to fix it. I am interested in your experiences with this problem. It is well within your right to contact patient advocates if you feel like you have been treated poorly or received substandard care. I also want to finish with this, not all doctors are like this.  Most got into this field to help people and to heal. I am not lumping them all in this category of complacency. However, I needed to talk about this. It needs to be discussed and brought out into the light.

We want to hear your story. Become a Mighty contributor here.

Thinstock Image By: Photodisc


I was diagnosed with hEDS at the age of 17. It was a very long and heartbreaking process, finally getting a diagnosis and learning what it meant for my life. At the time, I was in a semi-serious relationship with someone I had been with for almost a year, and he stood by my side through all the doctor appointments and surgeries. We eventually broke up, both becoming different people when we went to college. And I was back in the dating scene. After dating someone for three and a half years, returning to the dating scene was a bit of a challenge. And then you add all the health issues…

 

It is extremely hard planning a date when you don’t know if you will be able to get up that morning, or be confined to bed because five different joints have decided to dislocate at once. I went on a first date with a guy and my hands turned blue for a good 40 minutes because that is when my Raynaud’s decided to start acting up. I was never asked for a second date…

There are just times when I want to scream at people about how ignorant they are. Multiple people have used my health problems as an excuse to not date me. I can’t even tell you how many times I’ve heard, “Yeah I like you, but I just don’t think I can handle all the health issues.” And yes, that is their decision and I would not want to be with someone who isn’t able to handle it. I don’t get to wake up and say, “I don’t think I can handle these health issues” and then bury them. My health issues are always with me. And it saddens me that people can’t look past the health issues and see the person. I’m trying very hard to not let my health problems define me as a person, but when others define you by those conditions, you feel like you’ve lost.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via anyaberkut.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.