chronicillnesscommunity chronicillness chronicpain chronicillnesswarrior invisibleillness spoonie spoonielife chronicillnessawareness fibromyalgia chronicillnessblogger chronicpainwarrior chronicillnessblog spooniewarrior autoimmunedisease chronicallyill chronicillnesslife somenotnone butyoudontlooksick chronicillnesssupport ehlersdanlossyndrome arthritis chronicpainblogger depression earlychildhoodtrauma emotionalneglect emotionaltrauma empathproblems endometriosis fibro healingfromtrauma chronicillnessmemes
They mean well, they really do. But sometimes people’s “helpful” suggestions just send you over the edge #amirite Don’t let it ruin your friendships — here are five tips from one of our patient advocates on how to maintain friendships with a chronic illness:
✨First and foremost, determine who you can trust, and who you can’t. There may be some people who you just DON’T confide in about your chronic illness.
✨Tell them what it’s like to be you. A good friend will hear you.
✨Talk about the uncomfortable stuff — it will make your bond even stronger.
✨Keep in mind, you can talk until you’re blue in the face (please don’t do this), but no one else can really know exactly how you feel.
✨If they’re worth it, don’t give up — when we show our pain to our friends, it gives them permission to be honest about their hidden pain, too.
Get more advice on friendships with chronic illness from patient advocate and therapist, @katiejoramsey — link in bio.
Shoutout to all of our Mighty migraine warriors! We love this campaign from @the_migraine_life featuring @mindfulmigraine in honor of Migraine and Headache Awareness Month — it's a reminder of why you're Mighty today and every day:
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"To me, being mighty with migraine doesn’t mean being migraine free. It doesn’t mean being a super responder to treatment. It means demonstrating strength that you didn’t even know existed within you and using it to get through each day.
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I am mighty with migraine because I get up every day and fight the same demons in my head that I prayed the night before would be gone by the morning. I’m mighty with migraine because treatment after treatment has failed me, yet I still get back up and try something new. I’m mighty with migraine because although I’ve forgotten what it feels like to be without my pain, I believe with all my being that I will be pain free again. I’m mighty with migraine because I refuse to let migraine eat me up and turn me into a ball of hate and bitterness. I am mighty with migraine because I choose to share my hope and optimism with others.
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I think that all of you who live with this sneaky, time thieving, heartbreaking and incredibly painful illness that is migraine, are incredibly MIGHTY. There is nothing more badass than recovery. I am mighty with migraine and you are too."
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#migraine #mightywithmigraine #migraineawareness #migraineandheadacheawarenessmonth #chronicillness #spoonie #chronicpain #chronicillnesswarrior #chronicillnesscommunity #spooniecommunity #lupus #fibromyalgia #fibrofighter #mentalhealth #disability #themightysite #mightytogether
“IT’S OKAY TO FEEL
no one can be positive 100% of the time
just because you’re sick doesn’t mean that you have to be ‘positive’ about it
you can be mad, frustrated, depressed & still deserve as much validation as anyone else
you’re allowed to express your emotions or talk about things that might be ‘negative’
because that’s reality
the people i love the most are the ones who aren’t afraid to show all of it
a lot of us feel pressure to be positive & upbeat all the time, even when we don’t feel that way
this makes people feel ‘weak’ if they’re failing to live up to that, plus it’s not genuine!
so... i’m giving you permission
show it all
the good & the mess, i promise i’ll be here for you either way” - @lymewithitrockwithit. Show it all! We are here no matter what.
“I haven’t shared publicly what’s been going on with my chronic illness although it has been a major thing that has been happening in my world. I’m nervous that people will think I’m speaking up for attention or to play the victim card. To be clear - I don’t want sympathy. I want awareness.
In my ignorantly blissful mind, I assumed when you got sick - you went to the doctor, they figured it out, gave you medication, the end. Sounds logical except it’s a bit more complicated than that. It’s been almost 3 years of countless tests, doctors & specialists dismissing me, canceled business trips, a rare and false diagnosis, self-doubt and the list goes on & on.
Recently with my new ‘diagnosis’ I’ve finally had the courage to speak up. I started reading more books to educate myself on autoimmune disease, joining Facebook support groups, reaching out to people who had similar experiences, ‘sliding into DMs’ of chronic illness warriors I was following on Instagram. What I didn’t expect to find were MILLIONS of people in the same predicament.
I found strength in the resilience of other people I’ve met along this path. Most people can’t imagine how difficult it is to live in a body that doesn’t cooperate. A body you can’t control. Although it’s been a struggle to see at times, I’ve had the blessing to live pain & discomfort free for 29 years, and I’m confident I will get there again. Hopefully by sharing a bit of my journey, I’ll be able to spark a connection, encourage others to open up & raise more awareness on the chronic & rare disease crisis. ‘Alone we can do so little, together we can do so much’” - @humbleandspark
#Repost @myillnessmythoughts
Oh the accuracy ♀️♀️ #chronicillnesscommunity #meawareness #mecfs #cfs #fibro #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #chronicillnesssupport #chronicillnessquotes #chronicillnessblogger #chronicillnesswarrior #spooniehumour #myillnessmythoughts #butyoudontlooksick #Invisibleillness #arthrits #autoimmunedisease #spoonie #spoonies #spooniesupport #pots #treatably #lifewithanillness
M.E. AWARENESS DAY 2019... AND WHAT A DAY IT’S BEEN
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So, today I hosted an afternoon tea party at my house for my nearest and dearest, to raise some funding and awareness for the M.E. charities. I am overwhelmed by the love and support of my friends and family today and cannot thank you all enough for everything you’ve done for me! You guys have kept me going through the hardest of times and lifted me up during my lowest moments. I’ve spent today with a huge smile across my face and am so lucky to have such an incredible support network around me.
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Every single person wore blue to follow the #GoBlue4ME trend and the whole day was just perfect
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A massive thank you to @cozza86xx for making the most amazing cupcakes for the day and for your very kind donation.
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I’m going to bed a very happy and grateful girl this evening. M.E... BRING IT ON!!
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✨ Seeing the world through tired eyes. Stay tuned xo
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#chronicillnesscommunity #mecfs #cfs #me #chronicillnessawareness #chronicillnessblogger #chronicillnesswarrior #livingmytiredlife #wellness #spoonielife #thespooniesisterhood #wanderlust #mentalhealth #invisibleillness #invisibleillnessawareness #spoonietravel #crash #TheRealMe “MEawarenessmonth #GoBlue4Me #wherethetiredgirlsare
Shoutout to you .
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#chronicillnesscommunity #meawareness #mecfs #cfs #fibro #chronicfatigue #chronicpain #chronicillness #chronicillnesslife #chronicillnesssupport #chronicillnessquotes #chronicillnessblogger #chronicillnesswarrior #spooniehumour #myillnessmythoughts #butyoudontlooksick #Invisibleillness #arthrits #autoimmunedisease #spoonie #spoonies #spooniesupport #pots #treatably #lifewithanillness #wellnesswarrior
It’s been a while lovelies!
I have so much to catch up on here, and I will promise! If I haven’t got back to you yet I’m not ignoring you just taking it a bit at a time as I’m still a long way from being back to my “normal”...
Just wanted to pop on and share a post for #internationalwomensday to say to all my fellow women who battle invisible illnesses daily, deal with the ignorance of others and just keep on going despite all the crap their illness has thrown at them, you go girl! I’m proud to know such a wonderful circle of women who help lift others up despite not always having the strength to lift themselves, we got each other, it’s okay.
Despite all you face daily let me take a moment to remind you that you are amazing, resilient and above all compassionate. In the face of adversity you didn’t let it shrink, define or harden your hearts. No, instead you go out there speak your stories, use your voices and create community. Thank you to all the wonderful women I’ve met (virtually) through social media. It would have been nicer to get to know each other under different circumstances but, that’s not what life had in store for us. But we did connect and we did persevere when the odds were against us so to anyone who needs to hear it today. You are not alone in this. We might not be able to hold hands physically but we are united in this modern world and that’s what counts. And if you’re new to Spoonie Village welcome it’s great to have you here!
Sending you love, spoons and hugs
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