I don't believe chronically people are entitled to share their history, and I think abled people need to learn to be okay not knowing everything about a disabled person's life. ...But I do choose to share my own history and what I currently go through for awareness and education since I would be lost without others sharing their own experiences.
I've been disabled since late 2016 / early 2017 and am currently mostly housebound. I use mobility aids like crutches and a wheelchair and lots of joint bracing. I have too many symptoms to list, but I have a twitter thread where I did a daily hEDS challenge for a month where I share some more about my daily life with chronic illness.
If you have further questions, just DM or email me.
▼ [ so... what happened? ]
Looking back knowing what I know now, it's easy to see that I've had symptoms of hEDS all my life. A lot of twisted ankles and easy bruising as a kid. Born with extra teeth. Quite literally born with dark circles under my eyes due to my thin skin. Always trouble with my appetite and stomach problems. Gradually developing severe allergies to every fresh fruit and vegetable. Majority of my health problems were brushed off as things to 'grow out of' or a result of being a naturally nervous kid. Later I'd find out these were a combination of genetics and constant stress from childhood trauma.
Things started going noticably wrong with my physical health when I was 18. I was really stressed. Just graduated school, looking toward college, and my mom developing symptoms really similar to what I have now. I started developing problems with my knees and worse problems with my stomach while my mom became completely debilitated by what we now know is hEDS, Meniere's, Scleroderma, and so many other things. I gave up on college to be her carer, and at 19 I needed to get a job to support her. This is where things started going very wrong.
My first and only official job was working as a cashier at a now defunct grocery store chain. My knees immediately began subluxing (partially dislocating) from standing for 4 to 8 hours a day. I intially wrote this off as needing to lose some weight and work out more, so I did. Nothing changed. I also began needing more sleep, nearly 12 hours per day. I wrote this off as my job being exhausting. My digestion problems worsened to the point where I was in a constant battle with my stomach when commuting and dealing with regulated bathroom breaks. I 'solved' this by not eating until I got home from my shifts, even if I worked until midnight. And man... do I regret it.
I somehow continued to survive this job despite my constant self-sabotage, and eventually had an opportunity to be promoted and moved to a new location. The new location happened to be near my partner and my mom was much more independent than before, so I went for it. At the new store, now working as a full time clerk, my health instantaneously tanked. Through a combination of the longer hours, meaner bosses, more difficult work, and the concrete-dust filled working environment I managed to go from running for fun to barely able to walk. It felt like glass was embedded in the joints of my toes, knees, and hips. I had to start walking with a cane just to be able to stand upright. I wasn't happy to say the least. My bosses ultimately did not care about this. I was asked to stop my full time position and instead work from 4 am to 8 am doing inventory and ordering, before customers could see me with my cane and question the store owners about my safety. I did this for a short time to secure money for my upcoming medical pursuits before quitting.
The first thing I was tested for was stress fractures, which hEDS and arthritis can feel really similar to. No stress fractures. Then I had ultrasounds on my legs for cysts. No cysts. At this point I ran out of money, but I had the opportunity to get genetic counseling from someone my mom worked with. This counselor couldn't diagnose me with anything, but she could tell me what my DNA predisposed me to. This was really an invaluable step for me and I recommend it to anyone struggling with mystery illnesses and searching for a jumping off point. She told me that as soon as I got insurance I needed to find a rheumatologist and a geneticist and ask them about Ehlers-Danlos Syndrome. It took me two years to get the insurance, but I did what she said and here I am now.
▼ [ one day at a time ]
My day-to-day involves a lot of sleeping and symptom management. Symptoms are both physical and mental. It's easy to get in a really defeated mindset when housebound, so I have to heal my brain while I try and heal my body too. At the beginning I couldn't walk without tear-worthy pain, couldn't maintain an appetite, or stand long enough to take a shower without assistance. I was severely depressed; it's very difficult to go from active and fit to barely able to move. What I believe are symptoms of C-PTSD got worse with intense panic attacks, nightmares, and worsening responses to trauma triggers.
Now, after 4 or so years, I can walk short distances without aid, decently far distances with crutches + braces, and travel even further with a wheelchair. I can shower, cook, and clean on my own now which is huge progress from where I started. My pain levels fluctuate but overall the 'glass in my joints' feeling is only felt on my worst days instead of every day. Over quarantine I've developed agoraphobia, but whenever I can I challenge myself to go outside to overcome it. New problems like this and miscellaneous physical health issues pop up all the time, and I just deal with them as they come and go.
I currently have my partner, my family, and a solid team of doctors looking after me. I'm on a medicine routine of anti-histamines, a JAK-inhibitor, anti-inflammatories, and supplements. I try new medication all the time but those four things are what always stay. I previously tried the very typical lupus treatment of anti-virals but they wrecked my digestive system. Pain medication also has bad side effects for me. My weak stomach is an issue I've had looked at many times, but ultimately was just told to go on a low-FODMAP diet for, which I've been doing for over a year now.
In the past I've worked with a physical therapist who helped me develop a customized excercise routine to strengthen my joints. Since hEDS prevents ligaments around joints from recieving collagen, the idea is to instead utilize the muscles to hold everything together. I can't really give any advice to other people with hEDS about this, but working with a PT was invaluable for me and got me walking again. It's all about proper stance and posture and low! impact! exercise!!
cw // drugs - In place of pain killers, I use medical marijuana. All of my doctors prefer this method for me since my digestive system is very weak and can't hold up to NSAIDS and such for very long. What's worked out best for me so far are high concentration vapes; lower concentrations are usually cut with coconut oil which I'm allergic to. I use the OG Kush strain during the day for anxiety and pain management. From what I've seen in disability groups, hybrid strains like this are staples for daily management. I also use Grandaddy Purple at night before I go to bed. I couldn't tell you the dosage because of the nature of vapes, but I tend to aim low. I personally want to be able to feel some pain, but take the edge off of it. If I feel nothing, there's a chance I'll over-extend a joint and dislocate something, then I'll be in severe pain when the high wears off. I also use topical and tea infused CBD for milder management. I'll update this as I try new things but... weed expensive.
▼ [ diagnoses ]
|Hypermobile Ehlers-Danlos Syndrome||diagnosed 2019|
|Systemic Lupus||diagnosed 2020|
|Rheumatoid Arthritis||diagnosed 2020|
|Hashimoto's Thyroiditis||diagnosed 2020|
|IBS-adjacent Unspecified Gut Disorder||diagnosed 2019|
|Chronic Fatigue Syndrome||diagnosed in childhood|
|Oral Allergy Syndrome||diagnosed in childhood. though my case is unsusually severe so it's being looked into as possible MCAS.|
▼ [ being looked into ]
|Premenstural Dysphoric Disorder||progress: currently pursuing diagnosis and treatment|
|Complex PTSD||progess: ditto ^|
|Generalized Anxiety Disorder||progress: ^^|