This sweet girl is always by my side. Her energy keeps me calm and grounded. Dogs are such a blessing ❤️ . . . . . #chronicillness #therapy #pitbull #pitbulladvocate #pittyprincess #krimsan #dogsofinstagram #pitbullmom #invisibleillness #chronicpain #chronicfatigue
9 1
12 1
Omg guys 😍 . 🌱🌱Team Celery Juice t-shirts and tank tops are printed and in my hands! 🌱🌱 . I have been working on making an online platform so that purchasing them will be easy... (am not a computer wiz 😂 but I think it’ll be good!) and I will hopefully be publishing that later on tonight~ but if not tonight, tomorrow (Monday, in Australia). . Love you all. 😌🙏🏻. Feel so incredibly blessed to be in this position of creating something from my heart for such beautiful souls the world over who I appreciate so dearly. Lights up my heart and soul knowing that we are all in this together. You all have had such a huge impact on my life and I hope that when we all wear our team tops we feel that love magnified !! . Will let you know how the shop situation is going along a bit later! . . LOVE KATIE 😘🌈💕
25 22
Trying not to fade out too much. Yesterdays test wiped me out, retesting the heavy metals & mold levels this week. 1 Provoked IV chelation challenge test down, 1 more to go and a Mycotoxin panel. I’m so close, I’m so tired. Hopefully all my hard work is finally paying off and I’ll be finished with the chelation treatments & mold detox. If not, I’ll push thru and keep at it. There’s a thin line between determination & desperation. I’m determined to get my health back, and I’ll do whatever it takes. . . . . . . . #hea#healingjourney #heavymetaltoxicity #det#detoxior #chronicfatigue #chronicillness #autoimmunedisease #imgettingbetter #wellness #healing #cirs #hypothyroidism #detox #chelation #heavymetaldetox #adrenalfatigue #adrenalfatiguerecovery #recoveringfrommold #recovery #autoimmunerecovery
8 1
Do you suffer from a chronic illness? Are you in need of support from people who understand what you are going through? Join us The Unchargeables on Facebook. ❤️ Jen x --------------------------------------------------- 🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio. ---------------------------------------------------- #TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick
18 0
The difference two years can make is crazy. I miss being able to do gymnastics, but i cant now, and i have to find something else i like doing!💛 • #chronicillness #chronicpain #chronicfatigue #narcolepsy #epilepsy #epilepsyawareness #chronicfatiguesyndrome #wheelchair #scoliosis #wheelchairlife #spoonie #narcoleptic #epilepsywarrior #epilepsysucks #chronicillnesssucks #lifewithwheels
5 2
Apparently my chart looks abnormal. Would explain the #faintness 😖 #pulse #heartrate #pots #posturalorthostatictachycardiasyndrome #chronicfatigue #exhausted #charts
0 0
Shots, shots, shots!!!! . You may think it’s something yummy but it’s just celtic salt water shots! . I have always had low sodium but my levels are exceptionally and dangerously low right now. My functional doctor is very concerned so I been doing shots 2-3 times a day all week. . This explains my brain fog, fatigue, headaches, irirability, muscle spasms, and weakness. It’s been hard to listen to my body when I have been in such a routine of working out daily. But I can’t risk the worsening symptoms. . Cheers to you all and to me getting my sodium levels up! ❤️🙏🏼💪🏼 . . . #chronicfatigue #invisibleillness #lymie #hashimotoswarrior #thyroidproblems #soulseeker #wellnesswarrior #healingvibes #holistichealing #holisticlifestyle #anxietywarrior #faithandfitness #halfmarathonprep #misdiagnosed #napqueen #rescuedogmom #ticksaredicks
10 0
5 0
Hey hey hey 😊 I've been inactive on Insta for the longest time, purely because I was very frustrated and needed some time out. I needed some time to push my drs for help, to sort out appointments and to get a job to fund these prescriptions!!! Good news is things are looking up, hospital appointments have been confirmed and also managed to get a new job that isn't retail so hopefully less exhausting. Hope you guys are all well. Sending love and spoons as always. Sometimes you just need some time for yourself 💓
13 4
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5 2
Hard day but I’m home now and getting on. Having a lot of pelvic problems :( Sad that a sunny Saturday has been wasted but hey, what can you do about it. #chr#chronicpain #chronicpain #chronicallyill #chronicfatigue #catheter #urology #eds #ehlersdanlos #ehlersdanlossyndrome #raredisease #health #nutrition #gastroparesis #dysautonomia #hospital #life #sad #tired #pain
19 4
I’m doing a 5k run tomorrow! “Only 5k” is what I would have said years ago... when I was loving being fit and never thought hypermobility syndrome and M.E./CFS would take over my life. Now? Now I’m scared and know I’ll have to walk some of it but I’m doing it in memory of my Gran and to see if I can. Watch this space! . . #sw #slimmingworld #slimmingworlduk #slimmingworldsupport #fitness #health #running #chronicfatigue #cfs #chronicillness #fightingback #resrun #myresolution #fitnessjourney #journeybacktohealth
6 1
Ahh sweet sweet caffeine! I could really go for a caramel latte right now. Feeling crappy always makes me want good coffee to lift me a little. Even though people with IBD are constantly told to give up caffeine, I doubt I ever will. I've definitely reduced my intake, and won't have any after 5pm. It's just that good coffee feeds my body and my soul. A little bit definitely goes a long way! . . . . . . . . #inflammatribe #autoimmunedisease #invisibleillness #chronicillness #chronicpain #chronicfatigue #ibd #crohns #colitis #endometriosis #fibromyalgia #lupus #diabetes #pcos #pots #hashimotos #ankylosingspondylitis #rheumatoidarthritis #arthritis #asthma #spoonie #coffee #latte #cafe #sydney #blackelk
23 4
Overdid it. Thought I could handle a day out after a lot of stress but my body needed rest, not wine. Thoroughly enjoyed seeing my friends and getting out but my body is in a serious amount of pain and my head is now very sore. After weeks of stress my body is starting to flare. Time to take it easy.... . . . . #fibromyalgia #chronicpain #chronicillness #fitwithfibro #autoimmunedisease #spoonie #invisibleillness #pain #chronicfatigue #fibrowarrior
13 4
FINALLY made it back to @farmgatemarket for a vegan breakfast burrito from @pachamamaburritos and coffee from @burymestandingbagels ☕️ So nice to be back into our usual Sunday morning routine ⛅️
128 4
I realized today I’ve been updating on my journey, but haven’t been educating! So... how did I end up with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)? The Lyme bacteria loves to feed on myelin and cartilage. Myelin is the sheath that surrounds most of your nerves, protecting them and allowing them to send messages faster. When Lyme has been in your body unchecked for a long time, it can start to destroy your nerves and degrade your cartilage. For those new to my account, Lyme has been in my system since I was 4 years old, that’s a long time! This is also why I tore a cartilaginous structure and tendon in my wrist from opening a sticky mason jar (yes seriously) and other random injuries from doing things that shouldn’t have caused any damage! Thanks to this book ⬆️ for the reminder! 💚
83 7
The topic of today's post is another non-profit close to my heart--The Great Bowel Movement. They are a fantastic organization, stated by two amazingly strong women with IBD, whose focus is on starting conversations, education, and spreading awareness. Link in bio! 💜 . In honor of my newest blog and my followers with ostomies, I am also doing a giveaway of one GBM ostomy shirt. To enter, please like this post and comment below with a topic you would like to see me cover in an upcoming blog. On Friday, March 2nd, I will randomly select a winner, announce it here, and reach out to the winner via DM. . This GBM "Ask Me About My Ostomy" shirt is a women's large, but according to the site, the sizing runs very small. They suggest ordering a size or two larger than you would normally wear, so this would fit someone who typically wears a small or medium. . . . . . . . . #thegreatbowelmovement #gbm #ibd #inflammatoryboweldisease #uc #ulcerativecolitis #cd #crohnsdisease #chronicillness #chronicpain #chronicfatigue #spoonie #aut#autoimmunedisease #autoimmune #nonprofit #invisibleillness #ostomy #ileostomy #colectomy #ostomate #stoma #ostomyawareness #girlswithguts
14 2
Less than a 2 year difference. Chronic illness has completely changed my body shape from being on constant steroids (injections, infusions, pills, you name it). I used to have a very toned body but now I’m a bit fuller and my face (I swear) is bigger than the moon itself 😉 This was the hardest thing for me to deal with. I hated how my body changed but I’m coming to terms with it and learning to love myself even more than I ever have. Once a badass woman, always one. 💪🏼🌻
57 8
Today only! ✨ Get started with the most affordable kit, the AromaTouch Diffused kit! It comes with our top 8 oils, the Petal diffuser, a bottle of fractionated coconut oil, and today only you can add on DigestZen, and get Slim & Sassy for free! 🌿 Here's a quick highlight of what the oils in this kit are good for. -Lavender has been used for it's calming properties for thousands of years. Due to its soothing nature, it is used to promote relaxation. We use lavender at night to support a restful night's sleep. It's also very soothing to any red irritated skin. -Balance is our grounding blend. It creates a sense of calmness and well-being. this oil is placed on my pulse points daily to ease feelings of stress or anxiety. -Melaleuca is great for it's cleansing effects. This oil is great for skin support and blemishes. It's also one of my favorites to make non-toxic household cleaners. -OnGuard is our protective blend. It is wonderful to support and boost a healthy immune system. This oil is applied every single day to my family to support our immune systems. -AromaTouch is our massage blend and is known for its calming and relaxing effects. It is great to promote good circulation and for muscle support. -Deep Blue is our soothing blend. The immediate tingling and cooling effect of this blend is wonderful for mint & muscle support. -Wild Orange is an energizing citrusy aroma. It is great to energize and revitalize the body naturally. I put a couple drops in my water for its cleansing benefits. -Peppermint has a myriad of uses & benefits. It has an invigorating aroma and is a natural "pick me up". We love to diffuse it and use it topically for respiratory or digestive support. - This kit is super affordable and a wonderful gift to share with anyone! If you want more information on getting this deal, comment below or send me a private message. 🌿
28 6
So I have 2 new doctor appointments in the States coming up & some #anxiety is kicking in. Anyone else have Doctor related PTSD? This photo was from my last “New Dr” experience. My husband took it a few minutes before we met the PA from hell. When he walked in he did not introduce himself or ask why I was there but this is what he did say, “Let’s get something clear. I’m the Dr. You’re the patient. I’m only working here for 2 more days and frankly I don’t care if you get help. I don’t have to help you and I don’t care about you at all. Ok?” 😦 And although the smart aleck in me wanted to say “well..technically you’re not a doctor and why are you in “healthcare” if you don’t care?” My response was pretty much pure speechless shock 👉🏼😧 and then I came to my senses, decided to fire him & walk out of the examination room. Upside is knowing he’s no longer working there. Downside is the experience added to my overall distaste of “Healthcare professionals” and having been one before I got sick that’s saying something. Moral of the story 1)If you suffer from #DoctorRelatedPTSD you’re not alone 👋🏼 2)If you’re in healthcare: Care or get out. Lives are at stake. Money & ego shouldn’t be your motivating factor in going to work. 3)If your dr isn’t willing to help or listen fire them and find one who will (I know it SUCKS, I had to leave the country to find mine!) And 4)If you have a good doctor write them a thank you note because you’re blessed ✌🏼💙
16 10
Get LOUD for KIDNEYS! ❤️❤️ - I just received my awesome sweater from @getloudforkidneys and it's incredibly warm and beautiful. But the most important part of wearing it is the message of it! I'm not telling people to become donors because I'm in need of a kidney, I'm telling people to donate because they are literally saving somebody's life. Real heroes don't wear capes & fly, they're the ones that's ready to jump in with an organ for somebody in need. - Organ donation isn't spoken about all that often, but it is actually more important than discussing trumps leading role or what Kim kardashian wore. Do you know what kidney failure is all about? I'll tell you how just one kidney can make of a difference. - I've been sick my whole life. I was born with my kidney failure. So it's a chronic kidney disease. However 2010-2015, I was given the greatest gift of all, a new kidney from my mom. Those 5 years? I lived my life like I've always dreamed of. I was able to travel, eat, drink, be with my friends, study, work and I graduated high school. I was able to have a normal life. And yes, my mom is living her life just as she did before she gave me her kidney. She's doing very fine 8 years later. - So what is it like to be kidney sick? I'll tell you. It's the worst sickness ever. And I wish I could save everyone from this awful disease. Ever since I got sick, I've woken up every morning and puked. I'm sick everyday. I'm not able to walk around the mall because my feet will either swollen up or I'll get way too tired. My blood pressure has been so high that I lost my sight in both my eyes. The countless times I had a headache is one of the worst symptoms. The fact that I'm bound to a machine 3 times a week 4 hours instead of being able to live my life like any other 20-year-old-something would is terrible. Another fact is that I have to take 35+ pills a day because my kidney isn't able to function is my reality. And yes I have to inject myself 3 times a week too. I have to watch my fluid intake and take phosphate binders to my food. It's like everything I do has something to do with my kidney not working. I'm reminded of it in everything I do. -
33 6
4lbs gone this week!! That means I’ve lost all the weight I put on from my week away plus an extra pound so now I’ve lost 11lbs altogether🎉 #11lbsdown #4lbsdown #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatigue #cfsme #spoonie #spooniesupport #millionsmissing #spreadingawareness #mentalhealth #deppression #video #vlog #vlogger #videodiary #pos#positivevibes #positive #10lbsdown #wei#weightlossgoals #weightloss
34 1
This quote from Queer Eye made me laugh-cry (my brain sometimes gets the two confused) 😂 <—literally me. Next time someone asks me how I’m feeling I have the perfect response! Thank you for sharing @thechronicills 💓 . . . . . #queereye #chronicillness #chronicpain #chr#chronicfatiguesyndrome #chronicfatigue #cfs #me #cfsme #iistired #invisibleillness #disability #spoonie #spoonies #spooniefamily #spooniesisters
18 2
Been a good weekend so far but always seem to be suffering for something that I’ve done, you just can’t win with this illness🤷🏼‍♀️ hope you’re all having a good weekend. Sending love and spoons🥄❤️ #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatigue #cfsme #spoonie #spooniesupport #millionsmissing #spreadingawareness #mentalhealth #deppression #video #vlog #vlogger #videodiary #pos#positivevibes #positive #10lbsdown #wei#weightlossgoals #weightloss
34 3
I’ve been doing yoga since I was 15 years old, always drawn to the free-spirit, dance-like rhythm of it. . I was used to slowing down and stretching being the parts of sports I played that were unimportant and quickly passed over. . Yoga was so different and I loved it. But I didn’t actually “get it” for many years. . I can’t do handstands, and I was born with the worlds tightest hamstrings. . I’ll never post pics of me doing yoga on a beach cuz you’d be like “Oh no is that woman ok? Does she need immediate assistance?” . I’m always on about tuning in to how food affects your body. It’s the key to everything and has made all the difference in my healing journey. Yoga helps me cultivate this connection in another way. . By breathing through discomfort and actively listening to what the hell is going on in my body for a dedicated amount of time, I learn. It makes it easier to listen and notice when things are out of balance so I can figure out why. . It allows me to strengthen my body and workout in a way where I’m not gritting my teeth and pushing, pushing, pushing which overtime can throw me out of balance into a flare up. . Pushing beyond physical limits isn’t bad at all, it’s just now I know my boundaries and I gently push them with a goal of self-improvement with awareness. . This works for me. And it feels really good. Gritting my teeth and running 45 minutes on a treadmill with a TV screen shining into my face does not. It’s cool when we figure these things out so we don’t have to keep doing what we “should.” Shoulds are stupid. (I might get that on a T-shirt) @livewell_health #christinaaip
222 12
Do you know one of the biggest things that annoys me about being chronically ill ? Having plans that you're excited about and then your body deciding it's not happening, disappointing you and letting down your friends 😞 Now I'm super lucky with my friends, they're so incredibly supportive and kind which does make it easier 🙌🏼 There are other people just like me though who have lost all their friends because they couldn't always do what they planned and now they suffer from loneliness and low mood 😞 But the feeling of disappointment is heavy and it makes loving yourself difficult when your body literally does what it wants and you can't control anything Sorry about the negative post but I just wanted to show a downside of chronic illness people might not think of and the effect it can have on people . . . . #rantover #chronicillness #chronicfatigue #chronicpain #chronicillnessstruggles #chronicillnesslife #chronicillnessproblems #chronicillnessawareness #chronicpainproblems #chronicpainfighter #chronicpainawareness #chronicfatigueawareness #spoonie #spoonielife #friends #friendship #goodfriends #plans #missingeverything #annoying #sad #frustrated #younique #youniquemakeup #youniquepresenter #workfromhome #makeup #skincare #bossbabe #upliftempowervalidate
21 3
I have no good pictures of me to post right now as I am in #bed #shiveringandsweating in #pajamas with a #fever. #tylenol and #ibuprofen have been keeping it down fortunately. I am feeling better because the fever is lower. I did get a #streptest and a #flu#flu at the #urgentcare yesterday and they were both negative, but the woman said she still suspects the #flu and that my symptoms are consistent. #sickaf #chronicillness #chronicpain #chronicfatigue
9 1
OK this new blend is knocking my socks off! I’m working on trying to get rid of one of my antidepressant medications and clary sage has been my go to for a while. I made up this blend today and it is amazing. I put four drops of bergamot, clary sage, lavender, and stress away. Love ❤️ love ❤️ love! . . . #beingpresent #behappy #antidepressants #mswarrior #invisibleillness #autoimmune #autoimmunedisease #chronicfatigue #chronicillness #chronicpain
18 4
Yes I am 🙌🙌🙌 ❤️ Jen x --------------------------------------------------- 🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio. ---------------------------------------------------- #TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick
70 3
We must do our best to enjoy every minute of our lives. Living with a chronic illness is never easy. But I believe we must find the balance and not allow our illness to define who we are or our lives. That can be very difficult on some days. But never give up. You can live with chronic pain. There are lifestyle choices that can lessen your symptoms. You can take your life back. Never give up searching for those answers or those changes that can make your illness manageable. I’ve been able to do that with diet, exercise, supplements, meditation, yoga, removing chemicals from my life and so many other things. It was not an easy road but I would not change any of it. For my life is better. Stay strong. You can do this. . . . . #fib#fibromyalgia #fibroflare #fibromyalgiawarrior #fibromyalgiaawareness #chronic #chronicillness #chronicpain #chronicfatigue #autoimmune #chronicllyill #choices #chronicfatiguesyndrome #invisibleillness #sick #sickandtired #healthyliving #autoimmunedisease #fibro #healthylifestyle #spoonie #healing #homesweethome #love #blessed #grateful
11 1
Procedure yesterday went pretty well. Had a few slight complications but I’m alright. My head is hella foggy from all the drugs they gave me yesterday 😬😂 #invisibleillness #spoonielife #spoonies #hospital #endosisters #endometriosis #chronicillness #chronicpain #chronicfatigue
29 2
I did a thing today! Woop. Although now I feel hideous. It was a lovely afternoon at my friends little boys first birthday party. Lots of people but I managed to sit and enjoy myself. I was only planning on staying a couple of hours but I ended up staying nearly 4hrs. Having popped out earlier this morning it was possibly a bit too much! But I was having fun! FUN! I know our bodies don't like that 😂😂 so I've had a bubble bath and now I'm in bed with my water, green tea and the back up plan on tv. #myalgicencephalomyelitis #me #chr#chronicfatiguerome #cfs #mecfs #cfsme #invisibleillness #chronicfatigue #chronicillness #butyoudontlooksick #spoonie #millionsmissing #selfcare #fun #wildsaturdaynight #bed #needsleep #pem #didathing #exhausted #film #greentea
51 4
Can I just run away to the mountains? The last week has brought the rest and quiet I’ve needed. Getting out of the city has been good for the soul and family always helps. But I’m still longing for the mountains. I think I’ve reached a point in my life that I just truly know where I/we need to be. No matter where we think of going we always come back to one place. I’ve learned in living with fibromyalgia, chronic fatigue, anxiety disorder and PTSD that nature heals me. It calms me. There are no words to describe the peace I feel from nature. I can just breath better. I can relax. My husband and I are finally on that path. We know what we need to do. We know where we want to be. I know it won’t happen tomorrow but I do believe that it will happen for us. And we will get there together. Never give up on your dreams or finding your place of healing and peace. It’s so important to have in living with chronic illness. Blessed Be. . . . . #fib#fibromyalgia #fibroflare #fibromyalgiawarrior #fibromyalgiaawareness #chronic #nature #outdoors #peace #chronicillness #chronicpain #chronicfatigue #autoimmune #chronicllyill #choices #chronicfatiguesyndrome #invisibleillness #sick #sickandtired #healthyliving #autoimmunedisease #fibro #healthylifestyle #spoonie #healing #homesweethome #love #blessed #gratefultogod
26 1
When you have #PMDD, there will be days that you feel defeated. As I enter ’Hell Week’ i can feel my mind shifting from confident to unimpressed. My initial waking thought is ”can't I just lay here.” • • I have no makeup on today and as you can see no #boldlipstick to share with you. Because today I felt like my face needed a breather. But the truth is that I need a breather, I need life breathed into me, as I don't feel any. • • • I love posting all my beautiful pictures. You know the ones I take 100 of before I decide on the best one. But on days like today, the idea of keeping up with my social media and posting just one picture is overwhelming. But I did it; I did it because I want to be me all the time, I want to be #real about who I am, what PMDD does to me, and how I still push past it. • • • Psychology teaches us that human nature is attracted to beautiful faces. That we as a species are biologically wired towards beauty. Hence why many of the most popular accounts on Instagram are of people; we perceive as beautiful.• • • Here is my beautiful today, a picture of just me, no makeup, no filter, no extras, just me! If you are out there and feel like I do, know that YOU ARE NOT ALONE, I SEE YOU, YOU MATTER AND YOU ARE LOVED! #womenshealth #postpartumdepression #ppd #chronicillness #pmddsisters #chronicpain #invisibleillness #menshealth #chronicfatigue #fibromyalgia #lupus #getup #butyoudontlooksick #fatigue #chronicallyill #godmademe
14 5
We always talk about our ADRENAL SWITCH around improving sleep... however did you know this baby is awesome post-workout (we like to add to our post-workout shake)!!! Adrenal Switch is designed SWITCH ON your recovery with the perfect combination of standardised Ashwagandha extract, highly bio-available Magnesium, Zinc, B6 and L-Theanine to regulate cortisol, increase strength and much more. Recovery is paramount after every training or exercise session. If you are not optimising recovery, then you will never achieve your best results. At SWITCH NUTRITION™, we set out to develop the perfect adrenal formula by combining the above key nutrients with L-Leucine to SWITCH ON protein synthesis (muscle repair) and L-Glycine to SWITCH OFF muscle breakdown. ✔️ Naturally sweetened ✔️ Gluten, lactose & soy-free ✔️ Vegan friendly #switchnutrition #maketheswitch #flicktheswitch
48 1
Great time with my boys! #glammalovesu #specialmoments
17 1
**This is sort of a part 2 to my previous post**. Certain factors in the chronic illness/spoonie community make it a frequently stressful and toxic environment - competition, one-upmanship, defensiveness - factors that are exacerbated by high profile "professional patients" who set the bar for what defines "really sick". I'm fed up with it, fed up with young people worrying they're not valid in the community because they don't have a certain tool or an extra diagnosis. Fed up with accounts made just for illness and health obsessing posts to try and prove validity. I am chronically ill, but I am not just my illnesses, and neither are you. Post your life, your loves, interests, hobbies. Show your illness as a part of your life but show that it doesn't dominate your life. No one will judge you for that 💜💙 #spoonie #spooniecommunity #peoplehoptribe #chronicillness #chronicallyill #toxic #disability #sick #ehl#ehlersdanlosrome #ehlersdanlos #pots #keeponkeepingon #chronicpain #chronicfatigue
44 14
**This post won't mean much to anyone who isn't in the spoonie or chronic illness communities** I'm just going to come out and say it - some high profile people in spoonie social media are lying their asses off, getting unnecessary medical treatments, and profiting financially from doing so. Yes, I'm talking about Jaquie, but she's not the only one. Chronic illness is not a game of who can collect the most illnesses like a messed up "to do" list; actual sick people despair at the comorbidities instead of exploiting them for tools, toys, more surgeries. I'm not making this statement based on Jaquie's presentation of illness vs my own or anyone else's, but based on her own inconsistencies- foot drop that only appears once she mentions she has it; saying she doesn't have EDS skin involvement yet in an earlier video she said her skin was fragile and stretchy; magically being able to eat orally after getting a feeding tube. These things don't add up. She is getting paid in advertising and sponsorship money - the latter of which she doesn't disclose as she should. The way she presents herself as an expert and "advocate" (she only advocates for herself) is harming others with chronic illnesses because people end up comparing themselves to her and believing they themselves can't be as ill because of all her "tools" and diagnoses. Others with chronic illnesses who haven't played pick and choose with what doctors have told them, ignored normal test results and sought out the most invasive medical treatments. She and others like her also hurt the community as their high profile means they get media attention - giving opportunity to misrepresent already misunderstood illnesses (mitochondrial disease anyone?). I don't care if this gets me hate or drops my follower count, I'd rather speak out than stay silent and watch more people get hurt. #spoonie #spooniecommunity #chronicillness #chronicillnesswarrior #chronicallyill #chronicfatigue #chronicpain #toxic #toxicpeople #itsnotacompetition #becarefulwhoyoutrust #disability #supporteachother
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