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What I wish people knew about being #Undiagnosed #ChronicIllness

Being undiagnosed is scary, and it's hard work navigating the conversations that come along with it.

What I wish people knew about being undiagnosed:

- it's not good news that nothing came back on my tests, it means doctors aren't able to offer a treatment plan or cure.
- even though you don't understand, it doesn't mean I'm exaggerating, and you don't have to understand why something is happening to be able to support me.
- everything you're about to suggest, I've tried or researched, and I am not in this position through laziness and lack of knowledge.
- I hope for test results that show something other than 'inconclusive', because that would offer me some validation that what I'm going through is real.
- "how are you still alive?" is never an appropriate question to ask someone, especially when you don't understand how hard they are battling to stay afloat.
- being called a "medical mystery" isn't the cool joke or compliment you think it is, I am totally unsupported as there is no service available for people with such complex issues.
- not having a diagnosis and not finding anything conclusive in scans does not reduce the severity of the symptoms and their impact on my life.
- don't say "at least it's not...", it invalidates my experiences, and well-known conditions aren't the only diagnoses that have a significant impact on a person's life
- my 'interesting medical story' isn't something to chat about with your friends, relatives and neighbors over a cup of tea; sharing my symptoms and experiences without my consent isn't okay.
- prepare yourself that I may never get a diagnosis, or that it could take years, and so maybe don't keep asking
- even though it has no name, I still need support

I want to tell them that because I'm undiagnosed, I've lost my home and education, my independence and my financial security, and I've lost your friendship and belief in me.

I want to tell them I'm not undiagnosed anymore, that there's finally a name, and when that happens, I don't want you to suddenly believe me because you needed years and teams of doctors to confirm what I have been telling you for all along.

But for now, I'm undiagnosed, and I'm valid.

I wrote a version of this post for my blog accounts on social media, feel free to connect with me on those if you're interested. #ChronicIllnessBloggers
Please do not share my writing without giving credit to A Spoonful of Pain, thank you.

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My Chronic Illness Musings....

I’ve discovered a few chronic illness insights, in my older blog posts and Mighty articles, still really resonate with me today.

I thought they might be worth gathering and sharing as a collection of “My Mini Musings” in a new blog post. A way to gather my thoughts and share them with others.

I hope they resonate with you as we enter 2021.

#Quotes #Musings #ChronicIllness #ChronicIllnessBloggers #NewYear


How to have a positive attitude with chronic illnesses

I know that its so hard to have a cheerful attitude when you're chronically ill, but I thought I'd share my top 4 things to remember to help keep your spirits high even with a malfunctioning body. Link below.

(Also feel free to browse the rest of our site! We are here to help raise awareness about chronic illness, and to support and encourage fellow warriors!)

Wishing you all well, and sending lots of love and spoons to you!

IG: @positively_jord

#EDS #POTS #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicIllness #ChronicIllnessBloggers #ChronicPain #AdrenalInsufficiency #HypothyroidismUnderactiveThyroidDisease #VasovagalSyncope


(kind of) important!

hi everyone! so I finally stopped letting my anxiety take over me and decided to start my own blog! i only have one story posted right now , but more will be coming soon, and I will post updates on here also. if you’d like to check it out , I’ll attach the link below. it’ll mean a lot to me! gentle hugs ☺️
#ChronicIllness #ChronicIllnessBloggers

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1 year later!

Health Post: Long Caption/Story Below ↓

It’s been a year now. The picture on the left I have never shared with anyone prior to today. In the photo on the left I was 116 pounds with unmanaged chronic pain, working insane shift work, barely sleeping, & barely functioning. My pain got so bad I ended up so sick that I lost 56 pounds in just under 3 months!

I struggled with mental health for the first time & experienced crippling anxiety during this period of time. I lost a lot of people I cared very much about who did not understand what I was going through with my physical health & my new anxiety about my health. (I don’t blame others, it’s hard to understand at a young age unless you or someone you love has been through it).

Although a year later, things are not perfect. I am still not back to work but I’m making so much progress in learning to live with my chronic illness(es) and still be healthy and happy. I know I haven’t talked about my health much lately but with the change of seasons I feel like the three steps I’ve taken forward, I now feel like I’ve taken a step back. I’m not going to let this deter me however! Moral of this post: it gets better, it gets easier & healing is not linear or straightforward! Keep pushing 💕💪🏼
#ChronicIllness #InvisibleIllness #Fibromyalgia #ChronicPain #PCOS #WeightLoss #Healing #Anxiety #Pain #progress #Positivity #Motivation #Healing #MyofascialPainSyndrome #vitaminddeficiency #young #Canada #Osteoarthritis #osteomalacia #rickets #Migraine #PainManagement #PainAcceptance #GenitoPelvicPain #ItGetsBetter #BackPain #IrritableBowelSyndromeIBS #IrritableBowelSyndromeIBS #ChronicIllnessBloggers #blogger #Asthma #FoodAllergies #Allergies #PersonalGrowth #kneesurgery #Appendectomy #fighter #warrior #hormoneimbalance #HereForYou #pacing #TheMighty #MightyFeatures


If I were to start a “What it’s like living with“ blog series, who would be open to writing a post on one of their chronic illnesses? #ChronicIllnessBloggers #ChronicIllness #Spoonie

It’s just an idea at the moment, but I thought it would complement my 10 Things You Need To Know About Living With Chronic Illness eBook quite well. I’m pretty open about my illness, but I know not everyone is 💙