I suppose this ought to be about me.
I am 25 years old. I’m in law school. I have Classical type Ehlers-Danlos Syndrome (c-EDS).
That basic information tells you almost nothing about me. It does not tell you that I have a fire to do something to make the world a better place. I was once a half-decent recreational soccer player, but no better than that. I had the makings of a very good ballroom dancer, but injuries derailed that. I crochet, knit, paint, make candles, make jewelery – well, and a great many other things, it would probably be fair to just trail this off and say I’m very creative. I’m one of those rare people who is almost perfectly a balance between left-brain and right-brain thinking – I am both highly creative and highly analytical.
I’m disabled.
This blog is not so much about me as it is about living with my disability. To be certain, that does of necessity mean that some of ‘me’ seeps into it, but this is not entirely a personal journal.
I hope that perhaps I can provide a window into what life is like with a rare genetic disorder. Disability is something that is profoundly difficult to understand for a person who is ‘abled’. One of the things that you have to accept is that it is a fundamentally different life, and that some of your assumptions about life are not universal. If I say something that does not fit with your world-view, instead of shoving it away as wrong, try to open yourself a little and consider that it’s not wrong, it’s different, and that doesn’t make your world wrong, it just makes it not universal. (Of course, I do believe some things ‘abled’ people do are dead wrong – like the person who’s just running in the store for a few minutes and takes a disabled space because of their laziness. I don’t care how tired you are, those disabled spaces exist so that people who would otherwise not be able to go places can – not for your convenience.)
Don’t be afraid to disagree with me.
There are, of course, ground rules:
1) It didn’t happen for a reason. Pain and disabilities do not have a ‘reason’ behind them. There is nothing that ‘justifies’ them. Don’t ever say it happened for a reason. This is just not something I tolerate.
2) For those few of you who know who I really am, please keep that knowledge to yourself. This is intended to be very separate from my personal journal, and other places where I am identifiably myself. If you’re going to talk to me, please call me Kali, or Brilly, or BMBB. Something drawn from the name of this journal.
3) Play nicely in the comments. I don’t want flamewars. If you disagree, please feel free to say so! I’m fine with people disagreeing with me or with other people commenting. Just don’t be a jerk about it. Your worldview is not inherently right, and pretending like someone else’s worldview is inherently wrong is just irritating. Try to avoid ‘straw man’ arguments – where you put words in someone else’s mouth to make their view seem ridiculous.
4) Respect! No name calling, no mudslinging, no insults, no personal attacks.
It’s pretty basic, right? Act like adults.
~Kali
This page has the following sub pages.
Brilliant Mind Broken Body 
I love your site. Keep it up !
Great blog and great post! I am currently going through th disability identification process, and it helps to hear the perspectives of others like yourself.
Yeah, it can feel like you’re very alone when you’re going through the process – after all, most of us are surrounded by people who are ablebodied (AB) and who can’t begin to understand what it’s like to be sick…and we’re having to learn how to live as someone who isn’t AB.
Hi,
I don’t know how I happened upon your website. Thank You for your advocacy and inspiration.
I am disabled with Ehlers-Danlos, Syringomyelia, Hydrocephales, Chiari Malformation. I am 52 and look completely well. I walk, talk, have 3 grown kids and 3 grandchildren. My family does not understand, so what should I do? What do we do when we aren’t in a wheelchair? I purchased a cane just so people will be more likely to understand.
I love your blogs and keep up the GREAT work.
I have a brilliant mind, but I am worn out. Thank You for blessing me.
Linda Covert
Well, Linda, I can’t give you any insights to how you got here, but welcome. 😉
For me, crutches did a lot more to get people to ‘get it’ than a cane (or even two canes) did. They also do better at keeping me from injuring myself with my mobility aid – my shoulders bothered me a lot when I was walking with a cane.
~Kali
Hello Kali,
I’m fascinated by the latter part of the title of your blog, do you really see your body as broken?
Or is that a comment on how you might be seen by others?
I suppose it’s a combination of both.
It’s not uncommon for me to think of parts of me as breaking. My joints slip out fairly often, and to me, that seems rather…broken. If the body wasn’t broken, I wouldn’t need all these external things (braces) to hold me together.
I also recognize that when you’re dealing with any kind of disability, a great many people who are AB see a body with a disability as broken. I think that is the height of rudeness – a great many PWDs consider their disability part of who they are, and from that perspective, to think of a body with a disability as broken is to think of the person as a whole as broken.
Having said that, I don’t feel any cognitive dissonance over calling my own body broken because that is how I see it. If this was only an external idea about my body, I imagine it would be very oppressive. As it is, I think seeing my body as broken is part of how I cope with not being able to do so many of the things I used to do – I can’t swordfight because too many of the bits involved are broken, I can’t dance for the same reason, I can’t carry a full courseload at school because my body doesn’t work that way anymore, so on.
Sorry that got a bit rambly; it’s a rather complicated question. I hope I managed to make sense in there!
~Kali
I have rheumatoid arthritis. I was diagnosed at the age iof 24, 16 years ago. Each day is a challenge and yet I am grateful for any mobility I have.
I enjoyed reading through your blog and hope you will join us for Invisible Illness Week Sept 14-20. We are in need of guest bloggers and then will also have a 5-day virtual conference w/ 20 speakers. I also just began a new social network called Illness Twitters at htp://www.illnesstwitters.ning.com . Thank you for all you do to help bring more awareness to chroic illness and all that it entails.
I like your grit, your honesty. Keep up the good work. A long time ago a paralyzed veteran helped me to gain perspective, i.e., there are two kinds of people in this world: the disabled and the temporarily able-bodied. Sooner or later all of us become disabled; if not by birth defects, illness or trauma, then by the aging process. It would behoove the TAB’s to listen to the disabled & learn everything they can from them.
I have a daughter with Ehlers-Danlos Syndrome (EDS) – – not as disabled as you, but certainly challenged while bringing up two adopted children. Bringing her up brought out the fighter in me – – trying to make sense of puzzling physical changes;fighting with physicians whose attitude was basically “if I can’t explain it it doesn’t exist;” making sure that the school system met its responsibilities – – all the while dealing with my own health problems: rheumatoid arthritis since age 11, Sjogren’s syndrome, uveitis that nearly blinded me, interstitial cystitis, bipolar disease.
How do my daughter and I deal with all of this? We have no choice.
I have often said much the same thing – we deal with it because what else would we do?
Three options exist when you become ill:
1) Deal with it, adapt, and keep living your life
2) Put your life on hold while you try to take care of the illness, assuming that you will rejoin the ranks of the living once you’ve dealt with it
3) Curl up in a ball and stay there
I’m a fan of the first option, personally, though I can see why someone might take the second if their life does not have the flexibility to allow adaptation. Myself, I’ve never waited for them to make things ‘all better’, and while I have moments of wanting to curl up in a ball and stay there, for me it’s a short term method of coping when I’m overwhelmed.
Hey i read your blogs and i was wondering if you know if I can join the military even though I have Classical type Ehlers Danlos Syndrome
I believe it would depend on whether it has caused any disability at this point.
In my case, it’s quite impossible as I have difficulty lifting, carrying, and frankly just walking. If your EDS does not cause you any problems, you might be able to join. I know they don’t allow people in who need medication, so that will fit into the analysis as well. I don’t know if you do need medication.
I’m not sure I’d recommend it, though, as we’re more prone to injuries and something like Basic could really mess you up. If you decide to try, I’d say you need to spend 6-10 months before joining up just increasing your muscle strength and mass to help hold the joints into place.
Google continues to blow my mind! Thank you for this. I see we are both half minded! 😉 Equal parts creative and analytical. There are times the brain signals take a nap. I have friends and family who insist: “You take too many medicines. You don’t look sick. All you need to do is loosen up. Get out and walk. You ripped off the government by applying for disability. (I guess I need to be bedridden with sores to apply) You look great. You just need some vitamins. You need to go to another doctor. You just need a hysterectomy.” I’m looking forward to digging deeper into your blog. I’m looking forward to this years Conference in Baltimore. I hope everyone plans to go. I have EDS Hypermobile Type.I have chronic pain and dislocations. Currently I am dealing with Craniocervical Junction Abnormalities. ugh My brain is falling out and people are really confused.
I just found your blog recently and today took the time to really start reading. I love it. I also have EDS (I have the hypermobility type) and secondary fibromyalgia. I also have epilepsy, and more than one type of seizure. So I completely understand the loss of time! So far I only have to use a cane on bad days and whenever I leave the house I use my braces…and well often even if I don’t leave the house. I am lucky that I recently got a home health aide. I am on disability. Like RA Guy I am also going through the process of disability identification. I don’t really know any other disabled people so reaching out online really helps.
Your blogs are awesome and you certainly aren’t alone.
Welcome!
My personal care assistant is worth her weight in gold. I simply can’t take care of housework and she gets through everything so fast she makes it look easy. I don’t know what I’d do without her. (Well, yes I do – I’d live in a messy house and have lots of fights about it with my boyfriend.)
I’ve met a handful of EDSers via blogging, and it’s always kind of exciting to meet another one, because we’re so rare. I kind of wish I knew more in person!
Hey from Toronto, Canada
Just a quick hello from as I’m new to the board. I’ve seen some interesting posts so far.
To be honest I’m new to forums and computers in general 🙂
Mike
Hi – I followed you over from the Herban Lifestyle blog. The name of your blog drew me in. As an individual who has been adjusting to being newly diagnosed with MS, I could relate to your blogname. After reading many of you posts it amazes me how many parallels there are between us. Thanks for sharing your experiences.
Welcome, Kelly!
I don’t know if it’s something you’re considering, but I know that some service dog organizations do train dogs to help people with MS, including mine. I know a couple of people in our program have had MS, and have really benefitted from the dogs, especially from the assistance balancing while walking, as I recall.
~Kali
Hi Kali,
Overall, I like your definition of ableism. In fact, I even linked to your blog for BADD for a definition of ableism.
Rereading it now, though, it strikes me that the last sentence is problematic:
“The fact that people do not consciously choose to discriminate against persons with disabilities does not make it any less discrimination.”
Although there is a heck of a lot of ableism that falls into this category (the “nobody is against the disabled!” line, which I have heard, too), there is also plenty of discrimination that is blatant. For example, in my own life, I’ve had people flat out tell me they didn’t want to date me because I’m disabled, and my ex ended our relationship because, “I don’t want to be with a sick person.”
When interviewing candidates for a job many years ago — at an agency that served people with disabilities! — my boss said we couldn’t hire one applicant because his disability would make it impossible for him to do the job.
I know people who have been harassed and assaulted into leaving their jobs and homes solely due to their disabilities, and someone who died that way. In some cases, the assailants were motivated by a belief that the person wasn’t “really” disabled (they were faking, they were “crazy,” etc.)., so I guess you could argue that those people would not say they are against the “real disabled,” but that doesn’t even apply to all cases. I recently had a very unpleasant experience when taking my dog for a walk, and I look like people’s stereotype of disability — I was using a powerchair — and they made disability jokes intentionally to make me uncomfortable.
I know it’s just your sidebar — not intended as the last word on ableism — but what about changing it to something like, “Even when people do not consciously choose to discriminate against persons with disabilities, their actions are still discriminatory” or something like that? “…the PWD still experiences discrimination”? I dunno. What do you think?
You have a good point. I haven’t thought about that sidebar for a while, and that does need to be corrected.
I guess it’s because most of the time when I talk about ableism, people tell me that it doesn’t really happen, and that nobody would do that, and that people aren’t really ‘against’ me…ugh.
I, too, have heard of all too many experiences like the ones you mentioned, and I’ve suffered my share of them, as well. The majority of my class from my first year of law school decided that I was ‘an excuse’ rather than a person. I only know because a friend of mine who is also friends with some of the people who’ve snubbed me explained when I asked. It’s awful what people do sometimes, just because we’re a bit different, isn’t it?
Kali,
I have been diagnosed with Classic EDS, beighton score 9/9 though. Just left Baltimore area where I saw Dr. Francamono and Dr. Fraser Henderson. Loved them both. I am 3 weeks out of having a tethered spinal cord surgery and fusion of vertebrae c4-c7. I want to make sure I act with physical therapy when appropriate, and Dr. Henderson is suggesting one up there (I live in Kansas City). That practice does not take my insurance either. I don’t know where you are located, but have you found a physiatrist that you like? google searches are not being effective. Thanks a lot for your advocacy role!
Terri
I did find a physiatrist near me – he’s great. I got him by talking to my GP and a friend who went through med school at the university hospital where I have all of my doctors. They’re in the rehab medicine office of the university hospital. That’s where I’d recommend starting. Don’t be afraid to switch doctors if the first one isn’t a good match – the first one was a terrible match for me, so I tried a second in the same office (who was recommended by the friend) and he’s fantastic. It looks like this is your local teaching hospital – http://researchmedicalcenter.com/home/index.dot. They have a rehab department, which is where I would start if I were you (and your insurance allows).
~Kali
Kali,
I am enjoying reading your blog. I went to the archives and have just started at the beginning. I do not have any disabilties. I do know a couple people who do though. I love your attitude.
Is there a way to sign up to receive your posts whenever you send out a new one? I couldn’t find any place to do that except maybe to check the ‘Notify me of site updates’ at the bottom of the page. Is that the place. I’m not very computer literate.
Thank you.
Betty
Welcome, Betty!
You know, I’ve never messed with feeds. Hmm. Anyone else know? I have several readers who get my blogs that way.
~Kali
WordPress has a widget that allows you to put a button on your homepage so people can receive your blog via email. That’s what I do when I sub to blogs. I have never figured out RSS/feeds. I’m all about the email.
Go to your dashboard. Go down the menu on the left and look for “Appearance” and choose “Widgets.” There should be a widget for email subscriptions. Then you choose that, and you can personalize it a bit if you want, and wahla.
You can see I have one on my blog, if that helps. It’s one of the widgets at the top.
I was completely excited to just randomly stumble upon your blog. I have EDS Type IV (Vascular) and find fellow humans that have the same/similar condition reassuring.
Keep up the great work!
P.S. Do you happen to know of any blogs of people with EDS Type IV?
Welcome, Doug!
Unfortunately, I don’t know of Type IV bloggers off the top of my head. I know there are a couple of EDSers with type IV at http://www.butyoudontlooksick.com/forums, but as far as I know the other EDSers whose blogs I know about are either classical or hypermobility type.
Okay so i am not sure but my did at 16woke up one day after shooting up 7 inches and dropping 40 pounds with a hump in his spine a nd having so mich fun playing with his stretchy skin…. He has always been healthy with weird abilities to bones out of sockett…. I had a friend tell me there is a disorder that causea that….. He is a great kid with dreams of a military career… We are new in our town and he doea not have a doctor here….. Would a gen practicioner be good enoough or do i need to find a specalist and if i do what kind…… And do i need to take extra precautions until diagnosis is confirmed?
Well, that definitely sounds like some kind of connective tissue disorder may be involved. EDS or Marfan’s (if he’s tall and skinny, Marfan’s should be considered) sounds reasonably likely.
No, a GP is not enough for someone with those conditions. You want to see a geneticist who specializes in connective tissue disorders. Dr. Clair Francomano in Baltimore is particularly recommended by a lot of people with EDS.
In the meantime, tell him to STOP DISLOCATING HIS JOINTS! Any place where he is ‘double jointed’ or as you put it able to put ‘bones out of socket’, he needs to STOP doing that. It’s harming his joints in the long-term. A physiatrist (physical rehab specialist) would be able to help with bracing joints so he doesn’t damage them due to hyperextention and dislocation. (be careful with spelling here – I said physiatrist, not psychiatrist. The former deals with physical problems like joint injuries, the latter deals with psychological problems, make sure you’ve got the right one!) He needs to be careful of anything that puts stress on his joints. Playing with the stretchy skin is also not a great idea, as it is easy to tear and scar with that kind of skin type. Any parlor tricks – basically anything that registers to people as looking gross or impressive or freakish – he needs to NOT do.
If he has EDS or Marfan’s, he will need to have an echocardiogram done to make sure his heart is in good condition – both EDS and Marfan’s can cause aortic dissection, which can be detected early but if undetected can kill very suddenly. I have an echo done every 2 years to make sure my heart and aorta are in good condition.
As for a military career, some people with EDS and similar conditions are able to do it, some aren’t. It depends on the severity of his case.
Hi, wanted to say great site. Also have EDS (hypermobile type) & some thing else, being checked for Fabry at pres, would explain a lot. Have you had MRI brain??
I have had an MRI of my brain, which came back normal. I’m due for a new one, as I have headache symptoms that may point to a build up of fluid in the brain. Ugh. I do so hate MRIs.
Guess you have read the things by Diana Driscoll? Good luck with it all. Bee
Actually, I hadn’t – thanks for the reference! We’ve been somewhat concerned of late with my eyes (and the progression in my nearsightedness), so I’ve read a bit about EDS and eyes but I don’t think I’d come across Dr Driscoll before.
Hi again, Dr Driscoll is Ophthalmologist with EDS… she also has the CSF accumulation on the brain and I think her stuff on Pretty Ill would help you?? I really, truly hope so.
You want to email me?
Hey nice to come across your page. I have EDS as well but I don’t have a specified type. I saw Dr. Francomano too! I also have had RA since I was 9. One of my biggest problems has been my eyes so I have been trying to meet Dr. Driscoll (missed her at the EDNF conference). i am legally blind from about eight different eye deformities/disorders and it’s a pain because I don’t knwo many people with EDS affecting their eyes to the point that mine are. I look forward to reading more.
Stephanie
Hi hope everyone who happens here is doing OK. I’ve just had to resign my work as Nurse officially as I need to pull my horns in and reduce all the stress possible. I don’t know about the rest of you but the Autonomic Nervous System involvement is really disabling. I can’t exert myself to any degree with out ending up fevered, tachy and paying for it. I also consider myself to have MCS (Multiple Chemical Sensitivities), past diagnosis of SLE (Lupus) which I think may have just been part of the EDS because I only had raised ANA, no other Lupus antibodies. After a lifetime of symptoms, severe from 16 I was diagnosed Type III/Hypermobility Type at age 40. I am going to now focus on my art and enjoy my right/left brain strengths and focus on what I can do. I was trying to stay in Nursing, it was forcing me to declare that I was disabled… it all became about the things I couldn’t do. It all was depressing to have a brain full of great public health initiatives and a series of hurdles to get over. I am tall (marfanoid) and although the “right build” for hurdling, I was really crap at them! Still am obviously… but I can make some really beautiful and poignant art works that will be much more soul satisfying than fighting the system.
I really think EDS needs a registry that you sign up to with your Dr and undertake multi-system whole health questionnaires on reg basis to registrable and Drs get a much needed, clearer picture of what the Syndrome includes, then hopefully management/treatment guidelines… it has been a very successful model for other “orphan” diseases and I think it would be the most logical, fastest way to progress the EDS cause. What do you think?
Bee
Hi Kali,
Do you know of any Doctors in Toronto, Canada that can help my
daughter.
Please advise.
Thank you,
Robby
Hi Robby,
It would help if I knew a little more about the situation with your daughter’s medical situation, what’s going on symptom-wise and what her needs are. If you’re not comfortable posting it here in my blog, I’m more than happy to answer emails. You can reach me at brilliantmindbrokenbody at gmail dot com.
~Kali
She is having pain in her body, her wrist como loose easily, strong abdominal
premenstrual pains, her skin is loose, etc In other words, all the symptoms
associated with EDS.
She is going to college in Toronto, Canada, so I am looking for a specialist
to help her.
Thanks
Righto. I’ll reach out and see what I can find out. Hopefully, I can find another EDSer in Toronto who can give a personal recommendation, but at worst I can probably find the right kind of specialists. There are a couple I’d recommend; a geneticist or a rheumatologist knowledgeable about EDS is the kind of doctor who can diagnose it, but a physiatrist (physical rehabilitation specialist) can help a lot with stabilizing and strengthening joints. Anyhow, I’ll see if I can find someone who suits your daughter’s needs. It may take me a couple of weeks because my main means of reaching out is down for the forseeable future, but I am starting the search.
~Kali
Hey your basic info doesn’t say what country you are in. The health care system stories need that info to put into perspective. Especially the US since it is on another plane in terms of how it functions. (And I don’t mean a higher plane) Although it is pretty much universal that only about 1% of docs know much about EDS regardless of country. I sometimes think I should be contributing more to fix this but I myself am struggling though a residency with EDS. I assume leaving a reply lets you see my email if you want to chat with people who have left comments here.
Hello,
I was finally officially diagnosed with Ehlers-Danlos Syndrome this February with a previous additional diagnosis of Fibromyalgia. With a great deal of effort, research on my part (since most medical professionals until recently have not been helpful to outright harmful) and luck I have been able to . . . well not had to go down the path of applying for disability . . . yet. Finally found a really good physical therapist who was familiar with Ehlers-Danlos Syndrome even if she didn’t have professional experience working with it. Though she suspects one of her sons and her husband has Ehlers-Danlos Syndrome. Much of her rehab is based on Pilates as well as dry needling (¿ on exact terminology?) trigger points which is extremely painful but the results are worth every scream from temporary pain.
I came across your blog while searching Ehlers-Danlos Syndrome and therapy dogs. I’ve been thinking about getting a therapy/service dog but wanted to know how others with Ehlers-Danlos Syndrome were helped by a service dog. Also wondering if you knew if insurance ever covered any of the costs.
_______________________________________
A few thoughts on some of the comments below, I don’t look sick either and am often far more active than most people. What people don’t see, is the cost that comes once I stop moving, the “crash.” Sleeping or being in bed for the next 24 hours or more at the extreme end. Less extreme effects are the brain and body “fuzz” because of sensory overload where what should take 10 minutes will take an evening.
I am getting better about pacing myself and learning how with neuromuscular training on what muscles are supposed to be working when I move. Not retraining, because my body never learned or instinctively knew the right way in the first place. The cost of moving in general has decreased as I’ve done this, stabilized/strengthened my joints and learned what the proper alignment of my different parts and pieces should be.
I’ve also lengthened. I’ve been around 130-135 lbs. most of my life. The most I’ve ever weighed was a couple of times pushing 150. But when I stopped growing, my joints were too weak keep the bones in my legs where they should be. So as I’ve worked with my physical therapist on alignment and joint stabilization, I’ve lengthened about a 1/2 inch, changed the shape of my legs and had a major decrease in pain.
I don’t see my body as broken. I understand why some would. Perhaps it is simply semantics, but I see my body as never being put together right in the first place. Framing it this way in my mind gives me more control. I may have to work at it constantly for as long as I’m still breathing, but if I can learn how my parts and pieces should be aligned AND strengthen my muscles correctly to stabilize my joints properly . . . I can live my life as fully as possible. Hopefully not end up in a wheelchair like my grandmother did and where my mother is heading.
I’m usually much better about answering comments in a reasonable time. I’m sorry! My sleep schedule has been increasingly irregular, which just messes me up for getting anything done.
EDS and Fibro are an annoying combination, aren’t they? And oh man does it take a lot of research to keep yourself informed enough on EDS especially. So few doctors seem to really understand it, which means we have to learn it all ourselves and teach them (if we’re lucky and have teachable doctors).
I know Pilates and Yoga can be very useful for EDSers IF it doesn’t over strain joints and avoids hyper-extension of anything. Dry needling is the right term, it’s just not a common practice (if you mean what I think, which is just poking a needle with no medication into a triggerpoint; practices seem to vary about how often one pokes.
So here’s a question – do you want a service dog or a therapy dog? A therapy dog is to deal with mental health issues, not so much physical disabilities. I know that they can be very helpful for people with major disabilities because depression of a very particular sort is common with us, and isolation is part of the cause, which a therapy dog helps with tremendously. A service dog is trained for physical tasks. Hudson does things like run over and turn off the light, retrieve my fiance from a different part of the house, pick up things I drop, push buttons, and open doors. He also supports me when I walk, which makes it easier on my joints and helps maintain my balance. He provides assistance any time I change position – so if I go from sitting to standing or vice-versa, he takes a little bit of my weight and helps keep me balanced. He does the same if I am getting off the floor. In addition to his physical tasks, having him around helps me feel less alone. It also…hmm, how to explain it…it makes me feel like less of a burden, because he is always eager and happy to do things for me, and his presence in my life is to help me, so I’m not asking people over and over to help me or relying on the kindness of strangers. He also helps me feel less isolated, and it makes the times when I get stuck in bed a little less awful because I can talk to him and pet him, and if I’m up for it, I can work on his skills and teach him tricks.
In the US, at least, service dogs are basically never covered by insurance, but the cost of the dog (both initial and continuing costs for its maintenance) can be tax deductible the same way any medical equipment is. Also, most service dog schools rely heavily on donations and so do not pass the full cost of training the dog on to the recipient. In the case of my school, I paid about 4% of what it cost to train the dog. Some schools, the dogs are completely free. The situation in other countries varies; in some countries, it’s all out of pocket, in some they dogs cost the recipients nothing (well, to receive – after that, you have continuing care costs, though I believe in some countries, you get a public benefit to help pay for the dog), and some are like most of the US, where donations reduce but don’t eliminate the cost of a dog.
Ah yes, the crash is such a familiar phenomenon. It’s gotten to the point where my fiance and I will come home from doing something, and if I seem worn out, he’ll ask, “You going to crash?” because he knows it’s coming. I don’t do as badly with sensory overload typically, I just have to ask people to pause and give me sometimes entire conversations over again, because they didn’t ‘record’ properly, if you will.
Pacing is so tremendously vital to a good life with chronic illness or disability. It took me a while to accept, about a semester of expecting myself to be able to do everything I would have done before I developed my secondary conditions. It was horrific – I basically did nothing but prepare for class and sleep when I was home.
I can only imagine the relief of getting bones to shift into a proper alignment! I had to shift things back in my wrist after an injury that offset something, requiring a lot of work to fix it. When you’re talking weight-bearing joints, I can only imagine how much greater the pain (and thus the relief) must have been.
I am…torn on seeing my body as broken. On the one hand, it does not function as it used to, and some of the joints have had to be braced or retrained to work right, which kind of sounds like repairing them. On the other hand, I was born with this, I live with this, and I function (more or less) with this. I used to definitely think of myself as broken; I am not sure I do so much anymore.
~Kali
My heart goes out to you. Life is one of those tough things people do. Hope your finding respite some way or another. 🙂
I’m a parent of a 7 year old girl – diagnosed about 1 1/2 years ago with Classical EDS, among other medical issues. Very difficult to get information on and how to help her live as comfortably as possible. Specialists, (I do appreciate them), but tend to focus on their particular area of interest, and get a little too excited when they see her on paper – with all her various medical issues, and not focus on her “overall wellness” and her life as a little girl and how can I help her in her day to day and the years that will follow. She uses many of the phrases i have read in your blog like her “body is broken” to help explain what she feels, since she has always been in pain, and I don’t think knows the difference or knows the words to use to help us adult ABs in her life understand. Any thoughts or reflections on your young life, and things that could have helped you with what you know now. She is creative, smart, determined and never once complains. She compares her daily dislocations and bruising to her brother having blue eyes – “just the way she was made” she will say.
I was fortunate in managing to have very few serious injuries before I was in my teens. For me, just having my parents understand that it was real and I was not whining would have been fantastic. I suppose not being tempted into rock climbing and skiing, where I damaged my shoulder and my knee pretty badly, would have been good, but at the same time, you have to be careful not to smother a child with cautions. If she is at all interested, t’ai chi is very good for both mind and body, encouraging relaxation, stretching and building good muscles, and improving proprioception, which EDSers are classically bad at. Proprioception is your sense of where your own body is, and it allows you to do things like step the right height for stairs and go around the table rather than bumping it. It can be hard to tell if a child has the sort of mild proprioception issues that we tend to have, so on that point it is better safe than sorry. If she can do it without injury, swimming and splashing in the water is great exercise that is less risky for our joints.
Both then and now, I wish there was not so much negative talk about my body. I am quite aware of how fragile I am, I don’t need to be called a ‘delicate flower’ when I injure myself. I hate being called lame or clumsy. And it is a very different thing for me to say I’m broken than it is for anyone else to do so, no matter how fondly it is said. The sneers I got over the years from PT teachers because of frequent injuries were painful; if your daughter mentions slighting comments, please take it seriously and address it with the teacher/coach/etc.
That is all I can think of offhand, hope some is helpful.
I realized I forgot something I had intended to mention. I have found that physiatrists (physical rehab specialists) and occupational therapists are very valuable on the topic of maintaining optimal general wellness, reducing pain, and preventing and treating injuries. These are both specialties that look at how to perform actions best and identifying potential problems before they get bad. Appropriate bracing is very valuable for increasing function, decreasing injuries, and reducing pain. Be suspicious of rigid braces for anything but short-term treatment of acute injuries; what you want are braces that move with the joint but prevent inappropriate or overextending motions. I have hinged knee braces and non-rigid neoprene wrist braces that are very useful to me.
One final note: don’t settle for cheap shoes, especially athletic shoes!
Hi Teresa.
I don’t have EDS but one of my best friends for many years does. She was not diagnosed until teenage or young adulthood and even then, many of her “quirks” were not recognized as EDS-related until later. For example, that she didn’t have 3D vision, so she couldn’t catch balls or frisbees in PE and tripped if there was a change in the terrain that was obvious to others. She got a lot of messages that she was a klutz, etc. And didn’t realize how dangerous waitressing and such was until the pain from carrying trays was assessed by an EDS-savvy doctor, who were very rare.
So, it sounds like your daughter is ahead of the game in having a mom and doctors who recognize what’s going on for her. I think that will count for a lot. I offer these three resources below in hopes that they might be useful to you:
This article came to mind because the author talks about her experiences as a kid and teen with OI (some similar issues around injury and pain as w/your daugher) and how she came to view things later as not so much being about her body but about a culture that didn’t adapt to and accept her needs. I think, for example, the issue of pain control for frequent injuries could be relevant:
http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person
This website, http://listentoourstories.com, you and your daughter might both enjoy. I was involved with the project from the beginning, as the editor is my best friend.
Lastly, I think this is a terrific resource for parents. You might already know it, but just in case. It’s an anthology called Reflections from a Different Journey: What Adults with Disabilities Wish All Parent Knew.
Thank you!!!!!!!!!!!
You’re very welcome. Please, feel free to ask any other questions you have here or via my email. Your daughter is quite welcome to as well! One of the things I wish I had as a kid is people around me who got it, especially when I was struggling with bad injuries. People really didn’t know what to do or say when I had back to back injuries and was having a rough time.
Hey Kali,
How did u get your service dog? I am also in school trying to finish, but it take much longer with missed class do to POTS. Thank you for all this info on this site
Oh my heavens, Liana, I missed your comment and I’m so very sorry I didn’t reply sooner! Life has been…ahem…interesting around here, with too many body parts doing things they oughtn’t, if you know what I mean.
I applied to the closest service dog school to where I am that was a member of ADI (Assistance Dogs International). Now, I don’t know what you’re wanting your service dog to do, specifically, but since you mention the POTS, I’ll note that only a few schools train dogs for heart-related stuff, and it’s a bit unpredictable whether even a dog who’s trained for it will ‘get’ it. The thing with alert dogs is that they just can’t guarantee that the dog will be able to do it, so you have to go in knowing that they may not. On the sort of physical support Hudson does for me (helping me balance, picking up dropped objects, pulling open doors, pushing buttons, etc etc), service dog schools are able to turn out pretty consistently good dogs. If you want more specific info about my school, I’m totally happy to email you!
I will say that the service dog school I went to was tough on attendance. You had to be there, and if you faint (or for the people with seizures, have one of those), well, it happens. You give them that sort of medical info when you apply anyhow, so they tend to be pretty ready to deal with stuff, and the local fire department and hospital are quite aware that they’ve got a service dog school in their area, so may have minor medical emergencies. I ended up in the ER one night with what turned out to be one of the most painful IBS attacks I’ve ever had, but that had me there all night because there was worry that it was a burst ovarian cyst because of where the pain was.
With POTS, if you went to my school, I would recommend requesting to NOT be in the summer class, as a lot of the things we did were outdoor activities and my corner of the world gets pretty hot in the summer. Certainly too hot for my POTSie self to manage now; I don’t think I could do it even with a cooling vest. I would expect that the vast majority of schools take you to places so you can experience being with dog in public, and often at outdoor events or places, so make sure you know what the class plan is and if they can accommodate you if you can’t take the heat.
What a refreshing ‘about me’ page!
I’m reminded of when I took classes at a nice little University in the mountains. We studied the culture and politics of disability, and so much of what I learned helped me understand myself and my world. I hope to come back to your blog and read more.
Thanks for sharing what you’ve learned about disability, as well as your perspective on being disabled!
You know what else I think is a good rule (I hear this a lot from people who have no idea what EDS is or how it affects you):
No “You can’t let your illness run your life” comments.
As if people with EDS do nothing but wallow in perpetual self-pity and cause our own problems by exaggerating them. I *hate* when people say that to me.
I don’t let an illness run my life, but it certainly does make my life different. Just because people with EDS can’t live the same exact lives as everybody else, it doesn’t mean that we let it “run our lives.” I don’t know if people ever say that to you, but I’ve had it said a few times, and I just can’t stand it.
Oh do I hate that one! As if I can avoid my illness affecting my lifestyle. Pff. I may end up on disability, but I’d much rather have the fulfilling career I envisioned when I started law school. I don’t want to spend my life at home, I don’t want to spend as much of it as I do in bed, I want the energetic and exciting and athletic life I led before I got sick. I want to go out dancing, and be able to stay up late and get by on not enough sleep every now and again. I want to shoot my bow and play with swords and kneed bread and so many other things, but my body just won’t do them any more. My illness doesn’t run my life per se, but it sure changes what my options are.
I came here after searching to see if I could find experiential stories of those with Ehlers-Danlos who have tried law school. I have EDS (recently diagnosed), POTS (mildly), MCAD with idiopathic anaphylaxis (under control now), Celiac, atypical migraines, and a couple of other stray things. I’m to the point where my illnesses are limiting what I can do, and I’m trying to figure out what a realistic career might look like. I’m a 29 year old arts instructor, fine arts painter, and nonprofit activist, but find that pain is really limiting my physical ability to continue producing large art pieces and curtails most projects on which I can take action. I’ve considered law or academia as careers that would be intellectually fulfilling (I did extremely well in school), as well as possibly being some of the few that might effectively accommodate disabilities… although both are certainly a gamble job market wise. Any other thoughts on different careers that might be out there for people like us? I’m basically interested in everything.
Well, law is a really hard route to go. For one thing, law schools REALLY push people to either a 3 or 4 year track for the degree. The 3 year track, you’re talking circa a 40 hour week, and that’s if you don’t do any of the things that make you more attractive as an employee afterwards (law review, internships/externships/clinicals, mock trial team, etc). From watching people I know in the job market, I’d say that doing just the classes is a bad plan if you want to be hired afterwards. People either want to hear that you also held down a job or see you putting in time at things like internships or law activities. And that’s not including all of your readings. By the time you added those, I was at over 50 hours a week (my 40 hours included about 10 hours of reading between classes). That would be part of why I completely fell apart my 1L year. I might have been okay if I only had EDS, as I’ve done grad school, and the program I was in, that meant 70 hour weeks. But I’ve also got…something that hasn’t been fully described at this point. It may be an ‘idiopathic pain disorder’. It may be fibromyalgia. It may be an autoimmune disorder. We know for certain that I have EDS and an autoimmune disorder, but we don’t know what is and isn’t the autoimmune disorder, in part because I was seeing a rheumatologist who is very conservative with diagnosis and treatment. After your first year, you have some control over your schedule, but for your first year…you have no control at all. I came in as a full time student, as I didn’t know that my then brand-new problems were permanent. I was drowning. My dean of students met with me about halfway through the semester and told me pretty firmly (kindly, but firmly) that she thought I should drop down to part-time schedule. While that helped, I still had no control over when my classes were, so I was still having to trek in 4 days a week, when a better arrangement of classes would have had me coming in fewer days (especially since travel was brutally hard on me, and still is). It also meant I had some early morning classes, which is disastrous for me, and they won’t let you switch sections. That uncontrolled schedule, set by someone else, and utterly inflexible? That’s something that is characteristic of law school, and nearly every school does it. The only way you have control at all you have over your schedule that first year is to decide whether you will be a day or evening student. Understand that when they say evening, they mean that you will start at 4 and may not leave until 10. A full or part time day can be anywhere from 8AM to 6PM (or at least, it did at my law school). I firmly believe that like med school, the schedule is designed to weed people out in law school.
Three vital things to understand about law school. First is that attendance is NOT flexible the way it is for undergrads. You cannot get a health exemption because though it has been challenged, the American Bar Association’s requirement of 80% attendance in all classes has been held to pass the Americans with Disabilities Act. If you miss ONE class more than allowed, you will be given a grade of ‘F/A’ (Failure on grounds of Attendance) and not be allowed to sit the exam. It does not matter why you missed the class. Professors have the ability to grant exemptions for this, though most won’t. If they allow you a little wiggle-room, they will typically ask for things like papers on the readings for the class you missed. Second is that law school exams are a special kind of hell, for those of us who have been out of undergrad for a while. For one thing, they’re long – 3-4 hours. For another, they happen over a relatively short period of time. Finally, they push very hard to only give accommodations to students who have doctor’s notes explaining the need (also, if you’re going into law you need these for the Bar, which I’ll get to later). They are VERY limited on the accommodations they offer – the semester I sprained my back right before exams, my doctor believed I needed 2 weeks to recover before I should have to take exams. The school said we can’t do that, you must finish all of your exams during the exam period, no exceptions. If you can’t finish them all in that time, you are forced to take a withdrawal. I was only able to take 2, and at that…the dean of students personally made an unusual exception for me that allowed me to take my exams at home, which I was told had not been done in the history of my law school (which is over a century old), and was only allowed because that year, I lived on campus, in the grad apartments that were literally across the street from on of the law buildings. The third thing…I don’t know how to say this nicely. A lot of people who go to law school? They go to law school because they’re assholes. There is unfortunately a reason that lawyers have a reputation for being assholes – it’s a profession that holds a certain attraction to people who use the rules/laws against other people. That’s not to say that all of the students will be jerks – some of the nicest people I know, I met in law school. But the social milieu is disturbingly similar to high school. A 1L class comes in together, everyone makes their friends within their section (a group of people who share a schedule), and then they don’t make many friends outside of that. You will be ostracized if you’re too ‘odd’. I made the cardinal error of talking frankly about how much I was struggling with my health my 1L year AND keeping up with the reading so I was ready for every class and more than happy to answer questions and debate (because I do have that love of learning that characterizes most people who go into academia). I was frozen out by the main crowd, to the point where some of them would literally ignore me speaking if I tried to join in a large conversation outside of class. One of the lovely specimens followed a relatively popular friend’s personal blog to my personal blog, and upbraided me when I talked about a day where I felt like the professor had deliberately humiliated me. In my personal blog, whose address I didn’t give out to anyone but friends, where I’d carefully selected an avatar that didn’t look like me.
Right – so I mentioned the Bar Exam. It’s a 3 day, 8 hours a day exam. If you need ANYTHING – even a different chair – you need to prove that you merit the accommodation under harder eyes. One of the things you can use to prove you need an accommodation is being able to point to having needed it in the past for law school. So I’ll be able to point at accommodation letters that say that I should be allowed my own chair, and space to lay down, and time and a half (because EDS has screwed up my ability to type and the autoimmune crud has slowed my thinking), and I cannot take 2 consecutive days of testing, and no more than 6 hours in one day. (Phew. Yeah, I’ve gotten hard to accommodate – the autoimmune stuff and the EDS have made a mess of my back, mostly.) So I’ll be able to ask for those things because I had them before. If you don’t get the accommodation in law school, it’s REALLY hard to get it at the Bar.
Law as a discipline didn’t seem too terribly hard to me, compared to grad school, but compared to undergrad it is a BIG difference both in amount of time needed per week and in terms of the level you are expected to read at. The grad program I was involved in was one of the best for the subject area, specifically looking at sex and gender history. I was doing a 70 hour week, partly because I was having to learn Latin (which most of my fellow grad students had gotten significantly in undergrad and just had to polish up a bit), but even when I wasn’t taking Latin and was working on research, my schedule looked about like that. The program I was in, you were reading a full monograph per class every week, and taking 3 classes, so an average week was over 1,000 pages of particularly dense reading, and then having to prepare my interpretation of that piece, often in writing. It was brutal. I did include a dance class that met for 2 1/2 hours a week as part of my 70 hour weeks, because I needed that to stay sane (and loved every minute of the dance class). But I worked from when I woke up until I went to sleep three or four days a week, and only had time to socialize on the nights I went to the school’s ballroom dance club. I had admittedly a mediocre undergrad, so I wasn’t as prepared for grad school as some of the other people who studied with me, but I don’t think I was THAT far behind, and it seemed like most of the students I knew in other departments were working similar schedules. (Having said that, my fiance definitely didn’t seem to work as brutal a schedule as I remembered from grad school!)
Now, let’s just assume you get through whichever degree you plan on putting yourself through. I’ll be frank, the job markets for both suck. My fiance was finishing his PhD in Math during the first year and a half of our relationship, so he finished his degree during my 2nd year of law school. It took me 6 1/2 years to finish (technically not allowed – the code of conduct said I had 6 years, I had to apply to the faculty board to be allowed that last semester. Most schools have a 6 year time limit, from what I’ve seen. My school only had a set-in-stone exemption for someone who was pulled into active military duty.) He just got his first tenure-track position now. He did a one year position that was unexpectedly renewed for a second year, then bounced to another school, then had a year where he was adjuncting (which was awful – without my student loans, we would not have made it through that year). And his tenure-track job is at a community college, not a university. And he’s a math PhD, which doesn’t have as bad an oversupply of PhDs vs teaching jobs as most humanities positions do.
My prospects don’t look a whole lot brighter. The big law firms expect 70 hour weeks out of their new hires. No way in hell I can do that. The smaller law firms that talk about work/life balance tend to expect a 45+ hour week out of their people. Can’t do that either. If you can’t do that, you’re looking at the slog jobs – document review. Literally doing nothing but reading over documents – it’s how we deal with the fact that sometimes you’ll get literally years worth of paperwork about nearly everything when you request something from a company – it’s how they screw the other side over, and part of why it’s so damn hard to be a plaintiff against a big corporation. A good friend of mine who had a 3.5 GPA in law school (which is VERY respectable – kinda like the few people you knew who had a 3.8 or higher in undergrad) but no extracurricular stuff got stuck doing that for 3 years before he was able to claw out a better job. Or you’re looking at what I’ll be doing, which is opening your own law office. I’ll be frank, it’s a lousy idea, because there is SO much about the law that you can only learn by practicing. But I did 2 summer internships as a judge’s clerk and 1 clinical, so I feel like I’ve got half a chance.
The big thing I think a career needs to work for people like us is flexibility. And unfortunately, not many places offer that. I can’t work a 40 hour week unless I can do it on my schedule (starting no earlier than noon) and at home, on my furniture that was carefully selected to not hurt me. If I have to travel, if I have to sit on ‘normal’ office furniture…forget it.
I know this is a very downer response. To be honest, most of the people I know with EDS don’t work, especially past the mid-twenties. I sure as hell can’t do what my last pre-law school job was – I bartended and hosted at a restaurant. Those of us who are cerebral have a chance, but it is only a chance. Find your niche and build up expertise and experience. I’m spending my time learning how family court runs in my new state because my niches are family law, disability law, and LGBT law. I’m sure that there are people who will hire me because I can honestly bill myself as a LGBT-friendly lawyer, which means I may end up working LGBT family law cases. Or family law cases where my client has a disability that affects the balancing tests that are the heart of most family law actions. (I don’t think there is any other area where the whole area of law more or less winds down to a balancing test, though parts of other areas do – for example, accommodations in disability law require a balancing test). Find a niche that will make you necessary, but allow you control over your schedule. That’s the best advice I’ve got.
I’m so glad to have found this blog. I’m in a similar position, trying to keep up with my mental pursuits while physical deterioration gets in the way. I have EDS which was assumed to be type 3 until I was hospitalised for a near-fatal pulmonary hemmorrhage earlier this month. Now, unfortunately, Vascular EDS is potentially in the cards. I have a 6-month-old daughter and will be going to Oxford this October to do an Msc.I hope you keep on writing – it will be useful for me to see how you’ve coped.
All the best,
Lynn