I posted the following on facebook tonight. “Typical EDS family: I slept wrong the other night so SI joint is inflamed. Tomorrow morning Josh goes in for hernia surgery. Jace just got X-rays and his foot is broken and Meli is still dealing with torn ligaments in her ankle. When folks are amazed that we all live together, I’m thinking, “How else would we survive?”. When one is out of commission, the others pitch in. This week it’s a challenge, but because we are a team, it will work.”
I posted ,the above not to complain, but as a little window into our lives. Ehlers Danlos Syndrome is a genetic connective tissue disorder. You are born with it and have a 50% chance of passing it onto your children. My family has H-EDS, or hypermobility type. It’s the most painful. Sprains, strains, bones popping out of joint or breaking, internal organs acting up, headaches and even nervous system disorders are typical concerns for those of us who have this disorder. I wasn’t diagnosed until I was 52. My children were 18 and 20. They had both been emergency room children and I’d already gone through the humiliation of being asked to leave the room while my son was strip searched and interrogated as to whether or not he’d been physically abused at home. What a thing that was for him! I’d been sent to counselors from the time I was a little girl to treat my behavioral problems (waking up at night in pain) and my need for illness that the doctors couldn’t see. It was, in fact, a relief to find there was a real physical cause for my ailments and that I wasn’t hopeless because I couldn’t make the counseling work. I had raised my children without any family close by so my husband and I were on our own. Since my husband worked full time, actually, I was on my own. I believed them when they had pain but couldn’t get to the root cause. Doing this on my own when I had my own undiagnosed pain was a challenge.
I posted on Facebook because we so often get surprise and disapproval for living together. Can you imagine how it might be if we were all in different homes? My daughter would be the only adult in the house taking care of a 13 year old with a broken foot…….. On top of his autism, hormonal, teen angst, and his IBS which is often an EDS condition. IBS is tough with a broken foot not yet casted! I would be in my house with my back pain taking care of my granddaughter. And my son and daughter in law would be alone dealing with a 19 month old in and post surgery. It’s better that we’re all together. Whoever is able can pitch in and fill the void created by those who are unable. I can do up several loads of laundry so my daughter in law doesn’t have to while she cares for her son post op. My daughter has other adults to talk with while she cares for her son and he has other adults to lean on while he deals with the pain. And there is big pain happening for him. Broken bones aren’t any less painful than they used to be. Doctors just no longer treat the pain. Seems barbaric to me, but there you have it.
I belong to and EDS group on Facebook. Every time I look in on it, I am grateful that my family has this living arrangement. There are so many out there dealing with this invisible disorder without any family support. My kids are NOT mooching off of their dad and me. They contribute whatever they have to our living arrangement. We split the rent 3 ways. Those that work go to work and those who stay home take care of babies. When the work needs to be done, we pitch in wherever we are able at that time. Sometimes a couple of us have the lion’s share of the responsibility and sometimes it’s others. With EDS one never knows what physical condition the morning will bring. It’s a relief to know that there will be help if help is needed and that we’ll be able to reciprocate at some point.
There is also emotional support. Everyone here knows what it’s like to live with this disorder. When it seems too hard, everyone understands. If one needs to cry, it’s ok to do that. If one feels joyful to be a 4 instead of a 7 on the pain scale, everyone cheers with him/her.
My daughter had a persistent cholesteatoma a couple of years back and had three surgeries to remove it before it gave up and stayed gone. During this time, she developed surgically induced meniere’s disease. Can you imagine having a disease that induces vertigo when you already have a disorder your that causes your connective tissue is too stretchy and your joints are easily subluxed or dislocated and your bones break easily? She is now applying for disability. What would she do if she had to live on her own? She doesn’t. And, everyone here knows she really can’t work anymore. There is no judgement. We’re willing and able to help her through this period because she’s been there for us before and will be again.
We’ve found a way to live with this disability and actually thrive a lot of the time. I wish people could understand that. I wish my children were never judged for living in a multigenerational home when it’s such a great arrangement for all of us.
Teri's Healing Tides 
Wow! We have some things in common. I also was treated for behavioral issues as a child and throughout my teens even being locked up by my parents for “refusing to wake up for school” I am now 44 and both of my kids have a form of EDS. I was misdiagnosed with JRA for 10 years before I was diagnosed with EDS at the age of 41
My reason for not waking up for school was a form of EDS related narcolepsy. I still deal with that constantly. It’s one of my biggest issues. I also have major GI issues. Obviously I include my joints issues, hips go in and out, fingers and toes which have had 5 operations back to back 2 years ago which were botched and my feet are totally messed up now. Missing joints and bones from the surgeon who must’ve been on crack. My SI joint instability has me going in for nerve cauterization in a week. We’ll see how that works, if it works. My teeth are crumbling and falling out. And my youngest sickest child was adopted by my best friend to be taken to Norway for proper free and wonderful healthcare, she would have died without a pancreas and small intestines transplant. Her intestines were paralyzed and she had chronic pancreatitis from before her birth. She has an NJ tube and a GJ tube and doesn’t eat by mouth at all. Nothing by mouth. Her growth is stunted she has scoliosis and is going blind. It’s severe.
I sublux everything. Since I turned 32 and especially since 40, I have taken a huge nosedive with my own health. My oldest daughter is 23 and is having major spinal issues pain and we are trying to get to the bottom of that. She was born with dimples above her butt crack which made me nervous and she was checked as a child for tethered cord and needs to be checked again. Her father’s mother’s side of the family has an extra sacral vertabrae which just might be adding to her problem. We are going to my PCP to ask for a spinal MRI.
My neck is completely straight, I have 5 herniated discs in my c-spine and my lumbar-sacral spine is a mess. Arthritis everywhere. I have failed ligaments and my muscles have clamped down over subluxed joints which has caused massive pain and chronic fatigue. My muscles are now only working at 20-25% because they are in constant strain and use even when I sleep. I have Hypertonia when I sleep even during sleep paralysis.
I go in for a gastric emptying study tomorrow. I have chronic SIBO. I’ve tried everything. I hardly eat and am always full.
Everything is difficult, I have two roommates I never see and my daughter lives alone, soon to move in with her boyfriend. She takes care of me and cleans and does my laundry. I go to my mom’s house to shower once a week.
My temperature regulation is totally crazy, I’m always too hot but the past two days I’ve been shivering from the inside out to the point that my teeth are chattering and my joints are popping out and hurting from the constant movement. I never had pain in my neck until recently which dumbfounds my doctor. They did injections in it a couple of weeks ago and it’s bothering me now. Bad idea I guess. I was adopted and know only very little about my mom’s side of the family. My youngest half sister died 2 years ago at age 28 from Addison’s Disease. That’s really all I know.
I just resonated with your story because you were treated as I was as a kid with an invisible illness. I was locked up for 3 years and not allowed back home. Chronic pain and fatigue will make you a bit crazy and irritable especially when no one believes you. But my mom is back in my life and we are very close. She feels very guilty for not believing me. However she did have me tested psychologically plenty of times, and for learning issues. It was humiliating and made me act out. I was in a ton of pain. My “maladies” were a source of contention to say the least in my family and I was blamed for everything. My dad was abusive so my mom took a back seat kind of. Except when taking me to psychiatrists and having me diagnosed with everything short of schitzophrenia. But they did see the sleep walking and the sleep paralysis. I was very young, maybe 3. And then had a bad oanic disorder when I was 6 all the way into my 20s. That was noticed but ignored.
Anyway. Thank you for writing this and showing how diverse this disease can be. Such a spectrum disorder. I wish I could get them to listen about my 14 year old who has the feeding tubes. She hasn’t been officially diagnosed with anything yet and they refuse to test her anymore. They want to treat her symptoms and leave it alone. But she needs vascular testing if EDS is her issue. It must be since I definitely have it a d can see it cropping up in my oldest daughter. Take care and thank you again! I’m in the groups on FB too and my personal page is public. My name is Six Mercer.
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