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    Any study tips for chronic illness and chronic pain?

    It's really really hard to study when your in pain 24/7. Have you found any techniques that help make it just a bit easier?
    #ChronicIllness #OCD #Depression #ChronicPain #Spoonie #Undiagnosed

    2 reactions

    Any advice on how to deal with loneliness?

    Hi. I have no friends and my family really hates me. I deal with countless unbearable illnesses and already want to die. Knowing that no one will cry if I do, and the people I know will only be happy if I did is an unbearable feeling sometimes. I literally have no one. Not a single person would cry if I died. I already suffer from suicidal thoughts and knowing that literally no one would care I did it is a horrific feeling.
    If your in the same boat, do you have any tips on how to deal with this feeling?
    #Depression #ChronicPain #ChronicIllness #Undiagnosed #OCD #Spoonie #Anxiety

    600 reactions 150 comments
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    What’s been your experience with misdiagnosis?

    When you live with a complex or rare disease, it’s common to have some bumps in the road or delays in getting a proper diagnosis. Depending on your symptoms and even knowledge on your condition, it’s even possible to be misdiagnosed. (Which, in a lot of ways, is the same as being undiagnosed.)

    What have your experiences been like?

    📖 Need a Mighty read on the subject? Check out Kristi Moore’s experience here:

    #Undiagnosed #CheckInWithMe #ChronicPain #ChronicIllness #RareDisease #MentalHealth #Spoonie

    10 reactions 6 comments

    I’m New Here

    Hi guys, I know this group isn’t super active, but I’m really glad to have found it! I’m 18 and have been struggling with mental rules and intrusive thoughts for over half my life. I never told anyone and no one noticed, until I had a mental breakdown and my friend sent me a mental health screening. I got OCD as a possibility and have since done a lot of research. I think I have primarily harm OCD, but my doctor won’t give me a referral for a diagnosis because I “can still function!” So I am trying to get a diagnosis through my school. Researching and learning about OCD has been really helpful, because it explains a lot of my struggles since childhood, and I am really grateful to have found this community! #OCD #Undiagnosed

    5 reactions 1 comment

    I just want a diagnosis

    About almost every week I have an episode or complete paralysis. I go to a high school and I see the nurse all the time.

    Today I had an episode so bad that the nurse had to come in class and pull me out. Luckily my boyfriend was there and my dad came. Now I have to go back to the doctor.

    I’m just scared. I want this to be over with. I don’t want people to see me like this. It’s just hard. My friends my family the nurses my teachers and of course my boyfriend worry about me.

    I’m just going to have my fingers crossed that this appointment gets somewhere. 🤞🏽

    💕🥄✨ #Undiagnosed #mentally tired #Spoonie #chronicallyill

    5 reactions 5 comments

    I just got approved for a medical leave from work

    I recently started working with a career counselor and her number one recommendation to me was to take a medical leave from work. I have always been a reliable and committed employee and this has been a difficult concept to wrap my mind around. The problem is, by being reliable and committed to work I have absolutely nothing left over for me and my personal life has become a black hole.

    I was so so so anxious about speaking with my doctor about this. I have actually been unofficially boycotting him since last fall (he didn't know that) mainly because I just don't feel heard by him. He also doesn't seem properly equipped to deal with mental health concerns, and in particular completely ignores comments about feeling suicidal.

    But I did it. I booked an appointment with him, I said what I had to say, and I even asked follow up questions (not that he was very helpful with those). He didn't argue or push back, but agreed very easily, which was a surprise. I asked for one month, and he wrote a letter asking for two months.

    I have to tell my boss now and I am so anxious about it. I know this is going to devastate and crush her, especially with the particular projects going on at work right now, but I can't keep destroying myself in order to not destroy her. (I am second in command in our office, so we work together extremely closely.) The leave starts tomorrow, so I have to go in today and wrap things up.

    I have never done anything like this before, but it has been a long, slow decline for the past decade and I have reached a very low point. I don't like the idea of being on a list somewhere as having taken time off for health reasons because I feel like that will be a black mark against me for future employers, even though they are legally not allowed to discriminate against me for this. I feel simultaneously like a failure and like I have been set free. It's going to be a big adjustment.

    #CheckInWithMe #MedicalLeave #Work #Employment #MentalHealth #Depression #Anxiety #Trauma #Undiagnosed #change

    22 reactions 7 comments
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    Just going to leave this right here for anyone who wants to join along in saying it out loud (hint: everyone should).😘

    Hope you're all having the best day possible. 💜🌻🫶

    #MightyTogether #Anxiety #ChronicIllness #ChronicPain #Depression #Undiagnosed #RheumatoidArthritis #HashimotosThyroiditis

    24 reactions 1 comment

    How would I go about making a medical Binder?

    I've been trying to get my medical information together but I am not too sure how to go about it. Where would I start? #Undiagnosed #medical binder #question

    9 reactions 5 comments
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    I need to start telling myself this every day. Every time I doubt it. This is a great one - kudos to the author.

    #Undiagnosed #ChronicIllness #ChronicPain #RheumatoidArthritis #HashimotosThyroiditis #Hyperparathyroidism #Anxiety

    29 reactions 5 comments
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    I needed to see this today.

    COVID+ for the 3rd time in less than 12 months, even though I take every precaution possible and rarely leave my own home anymore. I had early vaccination (I was "essential" to my employer at that time), and a third booster later that year. I wear a mask. I wash my hands. I stay home when I'm sick. I wish most people would do just that very last thing, if nothing else.

    I had to take a family member to the emergency room about a week ago. I'm guessing that's where I picked up the virus this time. Again.

    I had a procedure scheduled for today (biopsy, basically) that should have been done last fall. It was so, so hard to schedule - I had to have someone drive me to the GI's office to even be acknowledged 4 weeks ago, let alone be seen and scheduled for surgery. This was 3 months after their physician saw me as an attending in the hospital and instructed me to follow up outpatient, and after my hematologist scolded me for it not being done yet (never you mind that I had covid in between the hospital and that visit too). Recent imaging shows even more reason to be seen asap. What are the odds that they'll call me to reschedule? Likely not good enough for me.

    This, too, will get resolved, but how much sicker will I be? Is covid just delaying things, or is it making it worse? Evidently I'm a medical mystery and my ten specialists who never speak to each other just can't seem to figure it out. They all say "you should go to Mayo!". Umm - okay? I can be there tomorrow.

    I had 2 other appointments this week with 2 other specialists - one follow-up that can likely be telehealth, the other as a new patient with the doctor who would have been my new neurologist except now he can't see me until April 25 (which is indeed the ideal date but not going to work for me or the lesion in my brain). So, looking for another new neurologist - luckily, I know a few. But thanks, covid.

    I just "retired" (trying that word on) from healthcare. After over a decade of working in the system, at least I know how to navigate this ridiculousness that is the US healthcare system and eventually get to a provider and/or diagnosis and/or treatment (well, maybe - this video game life of mine just threw another flaming donkey or frog or something at me and I'm still mastering this level).

    I can't fathom how the average patient can ever get anything done. We, as a society, can and should do much, much better than this. I, as one person, will use my voice as much as I can to continue advocating for this. I just need to call out sick today.

    So yes, I do deserve to be known, and so does everyone reading this (if you're reading this, thanks!). Sharing this in this forum has helped me feel a little better today, and definitely less alone. Now I'll dry my eyes and pick up my phone and fight for myself - because that's what we do.

    #Undiagnosed #ChronicIllness #Anxiety #RheumatoidArthritis #ChronicPain #MightyTogether #multipleautoimmune

    20 reactions 3 comments