I Am Living With An Incurable Disease Or Illness

This group is here for those living with incurable diseases who can look for support:) 517 People

    So today I went to the doctor

    and got a bloodtest and they took a urine sample. 4 hours later I went to a different doctor and got the flu shot and the pneumovax bc im immunocompromised from all of the meds im on. Now I can't move my arms
    xxalicerosexx xxalicerosexx
    18-21, F
    3 Responses Dec 12, 2014

    Chapter Two

    My rheumatologistisis trying to back me down from the prednisone because he thinks I'm going into remission. I haven't even said I have ankylosing spondylitis which means my joints are trying to freeze together. Anyway, I lasted 3 days on the lowered prednisone but now can...
    Wishingforremission Wishingforremission
    22-25, F
    Aug 19, 2012

    About a year ago I was diagnosed with a rare

    autoimmune disease called relapsing polychondritis. There's no way to cure it and most doctors have no idea how to deal with it. The only medicine that could help me has such severe side effects that my mom refuses to let me take it. My friends and family try to be supportive...
    mary909 mary909
    18-21, F
    Feb 11, 2016
    Dropbear Dropbear
    46-50, M
    Sep 13, 2015


    For 4 years I've had hyperhydrosis. I am a 18 year old girl and I'm a senior in high school. Hyperhydrosis is a disease where you sweat abnormally. I sweat non-stop in my hands, feet, and underarms. It effects my life every day. People with ask for a high five and when I do they...
    brooklyn8101 brooklyn8101
    18-21, F
    1 Response Jan 19, 2013

    I do not have an incurable disease.

    However, somebody very close to me who I love dearly was just diagnosed with a bloodborne sickness. I don't look at this person any different, nor am I afraid to be around them. But my heart feels very very heavy. I know it is stressful on them, and this may sound selfish-but I...
    1MoreSilverDollar 1MoreSilverDollar
    26-30, F
    1 Response Jun 3, 2015

    I have gastroparesis- When I was diaganosed I

    still had food in my stomach 15 hours after eating. Normal stomach emptying time is about 2 hours. I usually wake up every morning feeling like I've over eaten and need to throw up no matter what I had to eat the night before.
    ben243 ben243
    22-25, M
    Dec 22, 2015

    My Health Challenges Changed My Life For The Better.

    Many lifes could have been saved if they dared to believe we will be well. I was diagnosed with Adrenal Insuficiency 6 years ago when my life was getting better. The hard blow hit me so hard that i almost died. I had a hard life filled with abuses,bad spouses and sufferings. But...
    unshakable unshakable
    61-65, F
    8 Responses Jan 9, 2011

    Just A Chapter In The Life Of Moi.

    I was diagnosed with an invasive group B strep infection along with it a bloodstream infection and a severe fever. With already damaged nerves from diabetes this disease devastated my body and my mind, taking a toe and further damaging my nervous system as well as nerves within...
    dementeddru dementeddru
    41-45, M
    Oct 1, 2013

    Hi so I've got something called eosinophilic

    oesophagitus so sometimes when I swallow I feel like I could die it's that bad and after 8 weeks of taking an amazing drug that reduces acid the problem came back today and I had a bad do! Second to that is an underactive thyroid I'm battling too. I've suffered for over 5...
    Carl1978 Carl1978
    36-40, M
    3 Responses May 29, 2014

    "i Have Realized That I Am Allowing My Illness To Write A Very Sad Story"........

    I have realized that I am allowing my illness a very sad story........................I view myself as a failure for  having the illness of Neufribrobromatosis and for failing to find a cure. My neufribromatosis has led me to view myself as weakk, unattractive and essentially...
    Anto815 Anto815
    46-50, F
    1 Response Jul 29, 2011

    I just found out... that I should be dead

    before I turn 20. If I survive, it'll be a miracle.
    SpectrumOfTears SpectrumOfTears
    16-17, F
    3 Responses Mar 23, 2015

    I am 1 in a million! Well 1.

    8 actually, A few years ago I was diagnosed with a rare disease called pigmented villonodular synovitis (PVNS). It affected my right knee. It's an aggressive and erosive cell tumor. It causes severe swelling, pain and immobility. At a rate of 1.8 per million, the disease is so...
    Birabian Birabian
    26-30, F
    2 Responses Jul 14, 2015


    I was diagnosed with an incurable Chronic Illness last year called Polymyositis. Its an Autoimmune disease. Medicine is the only thing that can suppress the symptoms. It causes acute muscle weakness to the point of being in a wheelchair. I was only diagnosed because it had gotten...
    Alive2011 Alive2011
    41-45, F
    2 Responses Aug 13, 2012

    A number of years ago I had a bike accident

    which resulted in a leak of a cerebral spinal fluid (CSF leak) which causes intense headaches that leave me on bed rest. When the first leak occurred they told me it was easily fixed with a blood patch. 5 years and 9 reoccurring leaks later they thought they got it. Now I'm...
    starjelly starjelly
    22-25, F
    2 Responses Nov 7, 2014

    My Body Is Trying To Evict Me

    Or rather that is what it feels like.  I have RA and Lupus.  I was diagnosed with one three years ago and the other just this year.  It royally sucks.  I was very active until this happened.  Now, I just want to lie in bed and give up.  I take all sorts of medication...
    moonlightlvr moonlightlvr
    36-40, F
    2 Responses Apr 11, 2011

    I have Lupus and Lupus nephritis an incurable

    autoimmune disease and kidney involvement. One of the issues of living with an incurable disease is that its also an invisible illness. So invisible that I "look good" to everyone around me. Like I am not sick. So that's extremely hard. I hope that one day a cure will be...
    Young24Lupus Young24Lupus
    26-30, F
    3 Responses Mar 27, 2014

    For Years I Was Told

    that both my baby sister and  I had severe asthma..been on every kind of medicine there was for asthma! In November I had new niece born and she was born with Cystic Fibrosis..which meant that both of her parents had to the gene for her to have it.!! This in turn got my sister...
    theheartofmemphis theheartofmemphis
    46-50, F
    3 Responses Feb 24, 2012

    And I'd REALLY love to just say,

    NOTHING ANYBODY HERE WILL SUGGEST, WILL HELP ME. No. Stop being a fake doctor. You suck at it, and since nobody knows anything about CMT disease (unless they have it), its nothing but frustrating having to endure yet another probably well meaning but pompous know it alls who in...
    prettyprude prettyprude
    36-40, F
    8 Responses May 23, 2014

    I need somebody to talk!

    I'm felling alone and I do appreciate some company
    deleted deleted
    Jul 12, 2015


    Hey everyone! I am new here and have a very long story so I will try to make this as breif and to the point as possible. My disease is called Ehler's-Danlos Syndrome. I have type 3 or now called the "hypermobility type". I have had this disease my whole life and did not know it...
    rmcclere29 rmcclere29
    18-21, F
    3 Responses Mar 8, 2012

    UC Update

    Hi all just leaving a little ulcerative colitis update. Went to the doctor for my check up (I go in every 6 months to check on everything) We talked about taking me off of one of the two medications I am taking now but found that it's not time yet. The medications are so...
    deleted deleted
    Jul 28, 2009

    Ever since I can remember I've had vitiligo.

    its very visual. I try my best to have ppl look around it. but now that I'm older. I'm starting to remember how I've been treated (not so good). I had a mental therapists but with my job, I can't afford the help. I don't know what to do anymore. with my vitiligo it triggered...
    Curieln Curieln
    36-40, M
    Mar 24, 2015

    I am sick, but not of a very serious illness.

    Still, up to now they told me it is not curable, and I have to live with it my whole life. My whole digestive system is ****** up, my diet is very strict, and I am getting an exam this week to check whether I've got an ulcer or a cancer. I am a bit scared, and I hate being sick...
    Serenahil Serenahil
    22-25, F
    1 Response Oct 20, 2014

    Today Is Result Day

    My husband has been tested for everything. Today is the day we find out if he has MS. He is having so many complications for being 40. This is so scary. The waiting game is killing the both of us. I wish time would speed up so we can just find out, have our cry, and start...
    cabbiegrl cabbiegrl
    46-50, F
    1 Response Apr 10, 2013

    I Have Multiple Sclerosis

    I was diagnosed on Halloween of 2000. My sons were 5,7,& 9 years old. They each took it differently. My neurologist at the time thought I had a brain tumor. He put me into the hospital & started doing chemo & radiation, before he got any test results back. I was so out of it that...
    deleted deleted
    3 Responses Apr 5, 2012

    Survival Is The Most Important Thing!

    I AM DISABLED I have always wished I knew what it was like to run! This only describes my physical own disability and not how I feel about myself or disabilities overall, but this was not always the case. I was born with my disability so I have never known anything else, I didn...
    Chelebub Chelebub
    51-55, F
    Mar 15, 2013
    annirawrmuffin annirawrmuffin
    22-25, F
    1 Response Mar 27, 2014

    Asthma. It's uncurable.

    Treatable, but no cure. :/
    AfterFall AfterFall
    22-25, F
    1 Response Mar 23, 2015

    I'll tell ya, it is so hard living knowing

    that each day may be your last. I drive myself crazy trying to do all the things I want to do because I'm so worried that tomorrow may never come. My doctors tell me not to do this. It'll only put more stress on me, causing my blood to flow faster, and blah, blah, blah...it'll...
    ObviouslyAlex ObviouslyAlex
    18-21, F
    Dec 12, 2013

    Crps How This Disease Can Ruin Your Life, If You Want It To

    My story begins 12 years ago, while I was working as a Registered Nurse.  I reached for a notebook on  a bookshelf and my lab coat caught on a 3-Hole Punch (one of those heavy desk types).  It broke my heel, and that was how the nightmare began.  If you don't know what CRPS...
    nrsme133 nrsme133
    8 Responses Feb 14, 2012

    Does anyone on here use Nuvaring?

    I'm super moody, throwing up, in a lot of pain and have a horrid headache...anyone else?
    littlebobleep littlebobleep
    31-35, F
    Mar 25, 2014

    I Don't Know If I'll Ever Be Able To Accept This...

    I was first diagnosed with Ulcerative Colitis at the age of 12. And Primary Sclerosing Cholangitis at 14. Ever since then my life has been a roller coaster, up and down, along with the flare ups that occur when I least expect them. I'm 30 years old now, and am looking at having...
    cocoj225 cocoj225
    26-30, F
    3 Responses Oct 7, 2010

    I'm suffering with few answers.

    I'm diagnosed with this and that, but nothing adds up. Now I'm weak in my muscles. So scared.
    genuine1234 genuine1234
    31-35, F
    1 Response Mar 22, 2015

    So I have been suffering

    for several years and just had a really really horrible time losing hope and thinking about death and stuff.My family keep put pressure on me..they don't support me don't comfort me that's the saddest thing. I don't know why I wrote this post but sigh...really do I want my hope...
    diyaandalbert diyaandalbert
    18-21, M
    3 Responses Mar 1, 2015

    Hidradenitis Suppurativa

    At the age of 17 a painful boil grew under my arm, I remember my motheri in Puerto Rico putting a leaf from a red chili plant and some black ointment that felt like a lighter was on right under my arm, eventually popped and we thought it was the end of it. My first lancing was...
    luxeniss luxeniss
    4 Responses Apr 17, 2012

    Living With Ulcerative Colitis...

    J uly 8th, 2008 at the age of 22 I was diagnosed with Ulcerative Colitis.   Not many people know about this or what it is, just like I never did until I was diagnosed. Here it the definition of UC to give everyone a small idea of what it is: "Ulcerative colitis...
    deleted deleted
    3 Responses Feb 6, 2009

    My 17 yr old daughter was diagnosed in 2010

    and I have to work outside the home and leave her alone all day. Is there anyone who has tips on finding at home work for caregivers of ill or disabled family members and also, anyone who was successful in getting help from the state or government whether financially or...
    cgibson0 cgibson0
    46-50, F
    Jan 21, 2014

    It's called Tourette's Syndrome.

    It's getting better, but it will always be my constant companion.
    saboosa1 saboosa1
    16-17, F
    2 Responses Mar 23, 2015

    Hello everyone, I am 37years old

    and sick. I've been diagnosed congestive heart failure, and diabetes. My life right now is about meds and side effects. every day is different and sometimes difficult to deal with but somehow I manage. deep down I am really scared of what's going on with me. I try to remain...
    tman3737 tman3737
    36-40, M
    2 Responses Mar 24, 2015
    xxalicerosexx xxalicerosexx
    18-21, F
    1 Response Nov 3, 2014
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