Undifferentiated Connective Tissue Disease

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Undifferentiated Connective Tissue Disease
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    Why Do Our Friends Leave Us?

    I'm sharing a previously posted story written on here from 4 years ago.

    My very last 'surviving' friendship is now also drifting away out of my reach 😔. I hate the loneliness it brings.

    Having one friend made everyone else disappearing more bearable. But how am I to feel now I am alone? no more bestie or 'solid' friendship.

    Was it me? Am I too oppressive? Could I have done more?! - I'll never know.

    To clarify, we had a 10 year friendship and we were each others 'best friend' she is my sons godmother. We were literally thick as thieves - could finish each others sentences, say the same things at the same time. She, my husband and I were the '3 amigos'

    So our situation now is that she, and her new husband have moved to another town nearby. She's made new dear friends there,and has slowly weaned off me.

    The last time she saw me it was for my birthday 2 weeks after it 😓 it felt like she was feeling awkward after a while. After she left, I never received the 'I really enjoyed seeing you 🥰' etc text message we would normally exchange - even though I sent one myself

    What finally made me see it for what it is, is that I was meant to see her tomorrow. We planned this ages ago. But was told yesterday she cannot do the afternoon. Morning only. Then today got a message cancelling entirely

    Once before I got sick there was a time where I was all she had, even when everybody left her due to a trauma she experienced, I supported her through.

    I really thought after years of bullying and never fitting in due to Autism, I had found my 'forever friend' ❤️ for years and years our social media pages were constantly full of pictures of our 'adventures' and tagging each others names on posts. Almost announcing to the world what a close unbreakable friendship we had. It made me feel lucky and special🤦‍♀️ somebody liked me for me! I had never had a friendship this genuine before (i thought) I feel embarrassed to have felt this way now.

    I know people who don't stick around due to illness aren't worth my time. Equally I know people can change and drift apart too, but I thought we were stronger than that?

    But it doesn't change the hurt. Especially as this gradually happened over two years, feeling it slip away. Questioning if it was really happening? Surely not?! Then realising the truth, and the painful feelings of being alone, betrayal, of feeling replaced - as if I were a broken toy.

    I feel very sad really. Especially as I am housebound, and cannot make friends offline.

    Has anybody else been left totally alone other than their spouse/partner?
    (im lucky mine is incredible)

    This epitomises how I feel

    Dear Friends: Please Don't Leave Just Because I Have a Chronic Illness

    #friendships  #ChronicIllness  #Loneliness  #Depression  #UCTD #MentalHealth #Anxiety #Autism #ADHD #ASD #AutoimmuneDisease #alone #CheckInWithMe #Sadness #housebound #Longtermillness #hi #Lupus #MixedConnectiveTissueDisease #Fatigue
    #ChronicFatigue #ME

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    Acupuncture, is it helpful? - Please can you share your experiences? 😊

    Has anyone on here tried acupuncture and found relief from any of the following?:

    fatigue, autoimmune illness, joint or muscular pain, long covid, anxiety or depression?

    Would love to hear about peoples experiences, good or bad!

    I cant make my mind up about trying it! I'm scared incase it causes a flare? or is just plain useless as it is expensive!
    Thanks in advance 😊

    #Acupuncture #Healing #alternativetherapy #Pain #UCTD #Anxiety #Autism #Fatigue #ChronicIllness #ChronicPain #Fatigue #ME #Disability #AutoimmuneDisease

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    Beautiful Children

    Does anyone else, who finds it difficult to make memories 'the traditional way' with their children (eg too unwell to run around with, go on holidays or go on days out) find it really upsetting to watch them grow up?
    when you haven't been able to make the same memories as everybody else?

    Or feel like you have been robbed of being a traditional parent, and being able to enjoy their preschool years at home together, because as you were too ill to fully embrace this special time?

    My youngest has just started school properly after reception (kindergarten) and the past 3 years I've not been able to make memories with him in the way that I did with my elder son (12) before i fell ill 3 years ago.

    He was my little man and we did everything together.

    Now I realise 3 years has been lost and wasted to bedbound illness and suddenly my baby is no longer a baby like before, he is almost 6. Though we cuddle and play quietly often, I feel heartbroken and sad ill never be able to 'redo' those special times.

    Can anyone relate? As im struggling to move on from this

    Any advice very much appreciated, love Grace

    #Children #Family #Love #Memories #sad #mummy #ChronicIllness #CFS #ME #UCTD #longcovid #Parents

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    Missing Friendship - Can anybody relate?

    Feeling a bit lonely today guys, can anyone advise? ❤

    Probably like a few of you on here lots of my 'friends' abandoned me 2 1/2 years ago when I got sick.

    I tried to stay positive as I had 3 separate girls who I thought were 'keepers' I've been hearing less and less replies from them over the past 6 months.

    Yesterday I messaged all 3, and none have replied. I feel even more lonely then before I messaged them.

    There's nothing worse than feeling alone, when having friends is something you want.

    I don't even know where to find anybody new. I find myself talking too much to anyone now doctors, nurses etc. Just because I don't have anybody else. It hurts.

    What is worse is that it's my 'best friends' and my 10 year anniversary since we met this month, we were literally so close this is something we would have celebrated. she doesn't seem interested. She was like my family but seems to have moved on with new friends, as she's moved to another nearby town.

    When she does message me im always hearing about a 'friend' when I ask what she's been up to.

    Messages used to be often but now it's always 'sorry I didn't realise I didn't reply' or 'sorry I didn't send a reply i typed' or 'I completely forgot to reply' daily now. Where she's obviously messaging others and forgets about me.

    I just feel at such a loss. I'm lucky to have an amazing husband but it's not the same as girl time.

    Can anybody else relate? Sorry for rant. Happy Sunday everybody lots of love xx

    #lonely  #Friendship  #Friends  #COVID  #longcovid  #longhauler  #CFS  #ChronicFatigue  #Fatigue  #Autism  #ADHD  #UndifferentiatedConnectiveTissueDisease  #UCTD  #MixedConnectiveTissueDisease  #hiatushernia  #housebound  #CheckInWithMe  #lookingforchat  #lookingforfriendship  #UK  #England

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    I'm new here!

    Hi, my name is universe_song. I'm here because I have just been diagnosed with UCTD, among other things. I am learning to let go of my previous life and live this new one, with all that comes with it.

    #MightyTogether #PTSD #Fibromyalgia #Migraine #Asthma #Dysphagia

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    Surgery 5-12-22.

    I just wanted to let my leaders to know that I am having a total right knee done this afternoon and that I won't be in the Mighty today unless it is to wake up overnight to read the posts. I do more reading than posting because as soon as I think of what I want to say, I fall asleep. But do know that I get more out of reading than trying to find a counselor that doesn't understand our #chronic pain, #chronic illnesses, #UCTD , #Fibromyalgia , and my list of #mental health problems, plus about #10 more problems that I have. Thank you all for being here.😉 And I will talk to you soon.🤗!

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    Piano / music lessons at home? #learning #Music #creativity #AutoimmuneDisease #UCTD #Fatigue

    Morning Mighties!

    Has anybody on here, who Is pretty much housebound, and seething with boredom! tried learning a new instrument with a visiting tutor before?

    I would definitely need physical guidance as my co-ordination /fine motor skills can be tricky.

    I learnt piano as a teenager and regret not seeing it through, as I found two hands tricky and being a typical adolescent 'boring" 🤣🤦‍♀️. But now I see it as a challenge?
    Would love something to do which would also be an achievement for me.

    I'm a creative so and so and have tried a few crafts but they were not for Me and everytime I hear a piano being beautifully played i can't help but feel jealous

    I have chronic fatigue as part of my undifferentiated connective tissue disease and not sure if it would get in the way? I'm also very shy (autistic) so the initial meeting with a tutor may be kinda overwhelming but this is minor really

    Thoughts? Kind Regards
    Grace

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    Advice for #UndifferentiatedConnectiveTissueDisease

    Hello! New here. I'm 28 with recently diagnosed UCTD and inflammatory polyarthritis. I had positive antibodies to scleroderma as well but not enough clinical symptoms to be diagnosed with that for now. I was just started on Prednisone and Plaquenil. I was told about the risks to vision and potential GI upset. How long does it usually take to tell a difference with Plaquenil, and do the side effects lessen as you adjust to being on it? Does anyone here have tips for handling this condition or experience with it transitioning to a more defined CTD? #UndifferentiatedConnectiveTissueDisease #Plaquenil #Gatheringknowledge

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    I’m new here!

    Hi, my name is iamkatiepaige. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Fibromyalgia #EatingDisorder #OCD #Grief #ADHD #bipolardisorder #undifferentiatedconnectivetissuedisease #chronicfatiguesyndrome

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    #RareDisease Day!

    To quote the absolute legend which is Albus Dumbledore
    « ⚡️ 🦉 🧙‍♂️ It is our choices...that show what we truly are, far more than our abilities. «

    And on this #RareDiseaseDay and through out this whole month .
    I’ve taken time to DEEPLY admire the courage it takes to survive the unimaginable ❤️🦓.

    Rare disease takes you , and throws you in the deep end of a pool of when you never thought you needed to learn how to swim .
    Enlist you in a war you never signed up for .

    Once it comes into your life ,
    It changes EVERYTHING .

    And I use to think continuing to go forward , wasn’t a sign of bravery .. but a means of survival.

    Until I had the realization that .
    Some people don’t choose to go forward .

    Some get thrown in the deep end and let the water consume them .

    But if you are still fighting .
    If you are trying your hardest to stay .
    If you are paddling and paddling in the deepest and darkest of waters
    , even when it feels like you aren’t moving anywhere .

    That is an act of bravery .
    Continuing .. continuing despite everything against you . Fighting to survive against the impossible ans unavoidable may be one of the bravest things you can do .

    Never forget just how magic 🪄 you are ❤️🦉.

    Btw how AMAZING is this shirt I had a friend custom make for me ?! 😍 I’m OBSESSED.
    #smileon🐷 #spoonie #chronicillnes #cvid #ivig #RareDiseaseDay #rarediseaseawareness #zebra #nord #harrypotter #wegowarrior #themighty #patientadvocate #uctd #gastroparesis #autoimmunewarrior #supplimentaloxygen