Several days ago I did something that caused a pinched nerve in my neck/shoulder and all the way down my arm. The pain is horrendous and just when I think it’s getting better it flares up again. It’s always something and it’s incredibly frustrating. You’d think I’d be use to it by now but nope. I’d like a refund on this body, it’s defective. #ChronicPain #EhlersDanlosSyndrome #HEDS #Spoonie #POTS
Why is it so hard to tell our loved ones about our diagnosis. For some reason, it makes me feel as if I am letting them down. I am crushing their dream that one day I will get better. I don’t want to further burden them with knowing everything that is difficult about being my friend will never change. I am taking away their hope that I can go back to the old me. The funny thing is, I was never okay. I never have felt “normal”. I have always struggled to show up. I have always had this condition, just now I feel validated for how hard I struggle to be “normal”. It’s hard to explain that I will only get worse. There will be more things I can’t do. More obvious signs that I’m not okay. It’s hard to tell a loved one a diagnosis because you become the bad guy. Even though you’re the one struggling, you’re now obligated to make the person not feel bad for your diagnosis. To ensure them that ‘it’s okay, I’m fine’, the unofficial moto for the chronically ill.
For some reason, it’s hard for me to tell my loved ones about my diagnosis because I don’t want to hear ‘it’ll get better’ or ‘have you thought about…’. Trying to tell people and the look they give you, as if you have told them, it’s contagious and they might catch it. Trying to explain that it’s genetic, but just getting blank stares. Allowing them the time to grieve my diagnosis, one that I haven’t even fully grieved. Feeling the shift in the air, as if the person they have always known is gone and a stranger is standing in front of them. The tip toeing around certain subjects. Or the looks they give you when someone else is complaining that they feel bad, their eyes almost saying ‘you are so much more broken’. The deep breaths given when explaining you’re just too weak or tired to attend.
It’s hard to tell my loved ones about my diagnosis because I’m worried they will leave me. I’m worried that they’ve held on to the hope that dealing with me and my issues has an end. I’ve shattered their hope that I’ll bounce back. Shattered the idea that they can no longer trust the way I look, because my condition is invisible.
It’s hard to tell my loved ones about my diagnosis because I’m worried they won’t trust me anymore. I’m worried they won’t trust me when I tell them ‘Today’s a good day’ or ‘I promise, I will come’. I’m worried that my word will just turn into background noise, and they will start to make decisions for me. I’m worried opportunities will be taken away from me because they don’t trust me to know what I’m capable of.
It’s hard to tell my loved ones about my diagnosis because it’s hard for me to acknowledge my diagnosis. It’s hard for me to allow myself to be vulnerable when the professionals didn’t believe me. It’s hard for me to share my diagnosis because so much has changed already and the thought of losing people is harder than feeling alone in the knowledge of my diagnosis. It’s hard for me to share my diagnosis because at the end of the day, it doesn’t change that not matter the reaction or loss, my diagnosis is here to stay.
Not unlike others with undiagnosed chronic illness, I'm feeling a bit piled upon. Every day has its challenges simply by existing. I HURT. Everywhere. Being in pain that you just can't relieve is exhausting, even when you aren't also fatigued. And since I look healthy and am a relatively upbeat person, people don't get it and can't understand when its finally too much and you just fall apart emotionally. I know many of you can relate because I read these same things all the time.
I'm not so patiently awaiting the results of a whole genome sequencing, a visit with a rheumatologist, and a neurologist. So far, the big contenders are hypophosphatasia, hEDS, and MS. Those all have differential diagnoses to weed through, but I just want to know what is making me have so many struggles so I can come to grips with things and find ways to cope so I can more fully enjoy my life. #Undiagnosed #Hypophosphatasia #MultipleSclerosis #EhlersDanlos #HEDS #ChronicPain #Fatigue #ADHD #RareDisease #Waiting
Hi, my name is Emily Eileen. I am 27 years old. I was born with a brachial plexus injury, so disability has always been a part of my life. I have had several corrective surgeries at 11 and 25 years old. I was diagnosed with my first autoimmune disease, Crohn's disease, at 10 years old. I do monthly infusions to manage my Crohn’s. I have several diagnoses under my belt such as Fibromyalgia and am in the diagnosis process for several more now. I had a late diagnosis of ADHD at 24 years old. I have hypermobile joints and am exploring the avenues of EDS and POTS currently. Mental illness is also important to me as a Bipolar gal working my way through a PTSD journey. I believe much of chronic and mental illness goes hand in hand since they often come intertwined with one another. I am interested in the role trauma has in the development of chronic illness and vise versa.
Chronic illness has characterized every aspect of my life whether I wanted it to or not, and it has allowed for a more empathetic and slowly lived life for me. I am a fashion designer and use creativity as my prime outlet for coping. My handmade and upcycled clothing business is called Fever Dream Boutique. You can find me online on Instagram and Tiktok @FeverDreamBoutique
I was so happy when I saw your positive reactions to my selflove post yesterday. Thank you guys 🙏💕 So I thought it would be nice to focus on that a little more and try to bring in some more selflove and positive vibes here. ☀️
We chronically ill people forget ourselves quite often. We all are protecting people around us because we do not want them to suffer or to worry. But who protects us and helps us to get through each day of suffering? We are, every day again!Therefore, it is even more important for us to take good care of ourselves. We deserve to be loved and we deserve to love ourselves! So let's choose ourselves every day again! ❤️
Illustration from @illujodes 🙏✨️
An open letter to the people who never believed me:
To the PE teacher who made me run even after telling them it felt like my shins were going to come out of my knees,
To the doctor who told me I needed to get off google because it’s just growing pains,
To the orthopedics who told me ‘if I’m still in pain in ten years, come back’,
To the kids who made fun of me every time I wore braces,
To the teacher who told me to ‘stop moving’ or ‘stop sitting like that’ or ‘no you have to hold your pencil like this’ or ‘stop yawning’ or ‘seriously, your missing class for another doctor’s appointment?’
To every person who said ‘you really take too much medication, have you tried ___’.
To the people who have openly doubted the debilitating pain I deal with, the brain fog, the clumsiness, the fatigue, the blacking out.
I wish you would have listened and for one second believed that the pain and symptoms I was feeling were not in my head. I was not depressed. I was not looking for attention. I was asking the professionals in my life for help. Instead of help, I was met with road blocks, pointless referrals and being undiagnosed for 26 years.
It took 26 years, countless doctors, painful procedures, more xrays, MRI and CT scans I can count for one doctor to read my chart and say ‘have you been diagnosed with EDS? I read your chart and you have all the symptoms. It might not be worth getting diagnosed as it’s not a widely known condition but the specific pain in your shoulder you’re experiencing now is TOS. We see it a lot in patients who have EDS. You will need surgery’.
26 years and this doctor diagnosed me in less than 5 minutes.
26 years of every doctor I have ever seen ignoring my concerns and pushing me off to the next specialist.
26 years of ‘there’s really no reason for your symptoms, maybe you should see a therapist, they might be able to help.’
26 years of pushing my body past its breaking point because I was told that I must be causing it myself.
26 years of staying at home because I was too tired after school.
26 years of being in pain and ignoring it because it’s “normal”.
and now I feel lost in my body. I am having to relearn how to live because a doctor could not take the time to listen to my concerns, swallow their pride and look into it. The body that was screaming for help and was told there is nothing wrong.
So, guess what PE teacher…guess what doctors…guess what people...I was right all along. There was something wrong. There is something wrong. Nothing I did to myself. Nothing that I could fix by myself. I have Hypermobile Ehlers Danlos Syndrome. A genetic condition. It is rare. But it is real.
Instead of having 26 years of treatment, I have 26 years of irreversible damage done to my body by following your guidelines. I have 26 years of trauma from being medically gas lit. and to top it off, you’re the only people who can help me. Every appointment I have to mentally prepare myself to not be believed. Every appointment I will still have to fight for adequate treatment. Every appointment I still will be in pain.
There will be no fix. There is no cure. But maybe, if you would have believed me from the start I would have had tools to keep my body safe.
So please, for the next patient, student, friend, child you have, please believe them. Humor them. Run the diagnostic checklist. Do you job. Just so the next kid doesn’t have to wait 26 years to be told she was right all along.
So, my doctors strongly suspect I have hEDS. I have a fair few symptoms, and my rheumatologist is “pretty sure” I have it. My joints regularly scrape in their sockets and crack extremely loudly. More often than not I’ll be doing something perfectly mundane and all of a sudden, people hear a loud crack and they whip their heads in my direction and ask what the hell they just heard!
Anyway… For a very long time I’ve wanted to see if a chiropractor would help. Or would it make it worse? I dunno. I guess I just want some advice before I fork out for the assessment fee!
How do you know when to take the plunge on another assistive device?
How long is too long to wait where you are negatively impacting your health as opposed to maintaining functioning and quality of life?
Where are you on the spectrum of want to need to can't live without?
Do you listen to the Dr's that say you need to work towards removing assistive devices or to the Dr's that tell you to use them to improve your functionality and quality of life?
I'm on the fence (as it seems I often am when trying to manage my chronic health problems) about whether I should cave and get a shower chair or bench. I find showers exhausting but I don't want to take yet another visible step that confirms my failing ability to function and complete normal every day tasks. Some of my Dr's say I need to get rid of things I already use like my cane and others say I need to rethink my use of things that can allow me to function better which may mean adding more assistive devices.
What do you think?
Where is the line for you?
When do you know it's time to take the plunge?