Rare Disease

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    Severe Flare

    Having a severe flare in my face, ears, back of neck. Even my back is burning. The pain spike in both legs has been high all day. Erythromelalgia is not fun. Solidarity with all who deal with chronic pain. Here's what my left ear looks like. #ChronicPain #Erythromelalgia #ChronicIllness #RareDisease #DistractMe #SmallFiberNeuropathy #MentalHealth #Depression #ChronicFatigue #ComplexRegionalPainSyndrome #MightyTogether

    5 reactions
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    What’s been your experience with patient advocates?

    Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

    But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

    What have your experiences been like with patient advocates? Did you find one that was helpful to you?

    ✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: themighty.com/topic/ehlers-danlos-syndrome/find-hypermobile-...

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    1 reaction 1 comment

    Pain and Sleep

    The last week or two I have been struggling to get good sleep due to pain. I usually wake up every hour as I constantly have to change my position to try and get comfortable. I rarely ever feel rested and always feel tired. This pain is really starting to get old and annoying and I can feel it taking more of a tole on my physical and mental health. #ChronicPain #RareDisease

    5 reactions 2 comments
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    Do you ever wake up feeling bad? I mean, worse than you usually do when you wake up? That's where I was this morning, after an erythromelalgia flare that kept me awake past 2:00 AM. And my body is still in significant pain. This affirmation was helpful. Knowing I'm seen somehow lightens my burden just a little.

    So, I've texted some family members and friends to see how they're doing and to let them know I care. My chronic pain is still significant, but I can take my mind off myself for just a moment and check in on other people. It may be just momentary, but this is a way to turn my pain inside out.

    So, I truly want you to know that I care about you. How are you feeling today? And what do you do when you feel worse than you usually do? Do you have any physical, mental, or spiritual practices that help you? Thank you!

    #ChronicPain #ChronicIllness #RareDisease #InvisibleIllness #Erythromelalgia #SmallFiberNeuropathy #MentalHealth #Depression #Anxiety #Loneliness #ChronicFatigue #MyalgicEncephalomyelitis #ComplexRegionalPainSyndrome #MightyTogether #CheerMeOn #CheckInWithMe #DistractMe

    9 reactions 1 comment
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    Where do you go when you want to de-stress and relax?

    Who has a favorite place they go to in order to relax and feel calm? 🙋

    Finding those spaces that help us de-stress and slow down are super important and can help us to prioritize our health and well-being.

    Where do you go when you need some time to yourself?

    #52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

    94 reactions 38 comments

    Self Talk

    Me: Yesterday, I posted about not pushing myself, and people on The Mighty said they had similar experiences. So, don't push yourself.

    Also Me: Ignore all that and push yourself beyond your limits, even if it means possibly getting stuck out alone, missing your meds time, and spending the rest of the day recovering.

    #ChronicPain #ChronicIllness #Disability #Erythromelalgia #MentalHealth #Anxiety #Depression #RareDisease #MightyTogether #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #ChronicFatigue

    7 reactions 3 comments
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    What is an assumption people often make about you?

    Stigma and misconceptions are such a huge part about living with a health condition or disability — everyone has an opinion or perception about how your days should be spent and how your symptoms should or shouldn’t affect you. (This is where we say something about walking/rolling a mile in our shoes yada yada.)

    So we’re curious, what’s a false judgment people often have about you — health related or not?

    #MightyMinute #MentalHealth #CheckInWithMe #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Parenting #Autism

    150 reactions 41 comments
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    What is your go-to activity to do in order to de-stress?

    When it comes to managing stress, we may find that certain activities help us to relax and recenter ourselves — especially when we feel overwhelmed and overstimulated. These activities can range from simply laying in bed, taking a walk or going out for fresh air, to even doing something fun and creative like playing with photoshop or painting.

    What activity do you like to do in order to de-stress?

    #52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

    60 reactions 33 comments

    Becoming a grandmother

    I thought becoming a grandmother would be the most exciting thing in the world. Instead it’s made me extremely depressed because I don’t get to see him. I don’t even get a FaceTime with him. My heart is broken by the way I was treated after he was born. It was during the pandemic. I found out later her Mother was able to hold him. I was not able to hold him until he was 8 weeks old and I had to wear a hazmat suit. Her mother did not. She was able to hold him from day one. My husband and I are a lot older than her parents and we are not as well off financially. My son aloud this to happen and did nothing to stop it. I do not feel anything anymore. I have a brain injury that has gotten worse due to the depression and hurt I suffer with everyday. I don’t feel like a grandmother nor am I treated as one. On my birthday this past October I got a call from both my sons thats it. I waited for a FaceTime from my grandson that never came. I was devastated. They live close by it’s not like it’s out of state. We are not aloud to babysit him. We have offered and they make an excuse. Christmas with Santa Claus not us. Easter bunny not us. Valentine’s Day came and I finally had to say I had a gift and it would not reach him in time. She told me they would plan sometime to come out. They stopped in for 90 minutes sat and looked at their phones. He got his gift and they left. Everytime they leave I am crying and depressed. I hurt my back lifting him to get the mail. I’m still trying to heal my back. That was the last time we have seen or heard from them. We don’t seem to matter to them. I wanted to do something with Santa last year. My son says make it happen!!! I don’t know what he means by that. Then I see they took the train ride with Santa and we were not asked to come along. So if they already did it then why tell us to make it happen. I really have nothing to live for anymore. It’s getting worse and my son is now a stranger to me. The only way to protect my heart from more damage is to pull away. I really don’t know what else to do. I’m not rich Lyme disease took all my money. These last 3 years have been a living hell. Lost my mother , my brother and 6 others to suicide. Plus 22 more. I can’t even work anymore on line.

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    What's one thing you can do outside your comfort zone that will benefit you in your health journey this month?

    As I walk in my recovery journey, I often find myself at a crossroads with my comfort zone. On one hand, I find myself choosing what’s most familiar to me because it easier to access, but on the other hand I know that change and new habits can benefit my growth, especially when it comes to self-care and consistency 🤔.

    Something I’m trying that I know will benefit me and my mental health —and is out of my comfort zone — is reaching out and talking to someone when I catch myself overthinking. It’s so easy for me to go hours feeling overwhelmed when I know it would be helpful to talk out my concerns with someone else.

    What about you? What can you do outside your comfort zone that will benefit your journey?

    #Selfcare #CheckInWithMe #Grief #MentalHealth #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ObsessiveCompulsiveDisorder #PTSD #EatingDisorders #ChronicIllness #RareDisease #ChronicPain #Spoonie #EhlersDanlosSyndrome #CrohnsDisease #Cancer #Migraine #Fibromyalgia #MultipleSclerosis

    25 reactions 6 comments