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 supplement department 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 because I had no insurance and live in the US. 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 3 or so years, I can walk decently far distances with crutches + braces and travel even further with a wheelchair. I can take showers on my own and sometimes cook and explore my yard. My pain levels fluctuate but overall the 'glass in my joints' feeling is only felt on my worst days instead of every day. My mental state is far from healthy, but I'm learning new ways to cope. New problems pop up all the time that I have to tackle, like my newer digestion issues, but I'm always working on it. I'm very lucky to be in a place where I'm taken care of by my partner and our families so I don't need to work. My partner is my emotional support and carer.
Feeling like your days mean something is important when living like this, otherwise time blends together. I rely a lot on my art, writing, and world building to feel productive because it's effort in a tangible form. I set projects for myself and join group art projects and events sometimes. It takes a lot of self motivation, but it's worth it. It's also important to feel social since chronic illness is phyically isolating. I'm very active on Discord where I spend majority of my time creating, RPing, and chilling in servers with my friends. I'm also in chronic illness servers that I'm not as active in, but I feel it's important for me to have the option to surround myself with people like me. Sometimes knowing you aren't the only person who has a rib that pokes out sometimes is enough to make it through it. I also rely on social media for... being social, but I've found having tight-knit friend groups is much better. Company and reassurance from my closest friends keeps me going most days.
I'm currently working with a rheumatologist... no primary right now because of COVID-19. My rheumatologist has me on a routine of two histamine blockers, a thyroid hormone replacement, several vitamin supplements, and a new JAK inhibitor. I won't say exactly what they are publicly because that feels irresponsible, but if anyone wants specifics to compare notes just get in touch with me. The histamine blockers have allowed me to eat things I wasn't able to due to severe allergies. The thyroid replacement has given me more energy and stability. The JAK inhibitor is really finicky, but when it does work it reduces my arthritis pain significantly. My rheumy also has me on two antivirals before prescribing me the JAK inhibitor, but they caused a lot of harm to my digestive system.
I've recently worked with a gastroentologist. I have symptoms of IBS, but no physical evidence of it. He told me that my symptoms are likely a result of my hEDS, but there isn't enough research for him to say anything definitive. I hear this happens a lot for people with EDS. He prescribed a low-FODMAP diet (which I was basically already doing anyway from process of elimination) and that's about it.
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 - I manage pain and anxiety primarily with marijuana, which is legal where I live with a doctor recommendation. All of my doctors prefer this method for me since my digestive system is very weak and wouldn't hold up to traditional pain killers 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 6/3/2019|
|Systemic Lupus||diagnosed 4/6/2020|
|Rheumatoid Arthritis||diagnosed 4/6/2020|
|Hashimoto's Thyroiditis||diagnosed 4/6/2020|
|IBS-adjacent Unspecified Gut Disorder||diagnosed 8/3/2019|
|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 ]
|POTS||progress: mentioned by doctors but so far no action taken on that.|
|Premenstural Dysphoric Disorder||progress: talking to a psychatric nurse practitioner off record. waiting for physical problems to ease up before pursuing diagnosis/treatment.|
|Complex PTSD||progess: ditto ^|
|Generalized Anxiety Disorder||progress: ^^|