Rare Disease

  • Posts: 1
    02/09/2018  00:40

    Hi I’m Michelle, I’m a 32 year old single mother of four. I am the one in a million with budd chiari syndrome and it’s killing me. I was diagnosed 15 months ago but don’t know if I’m coming to terms with it. First I lost my job, then dcf took my children because they think I’m too sick, because of losing my children I lost housing which got my kicked off the transplant list that could have prolonged my life several years more. I lost everything and I’m completely numb. I was attempting suicide repeatedly until they got me on strong meds and now I’m just a zombie trying to live my life to the fullest while having no desire to even have fun, it’s just a distraction. How to I face the loss when I spend so much time pretending all is fine. I’m constantly on the go trying to escape the heartache and guilt and disappointment in myself even though I didn’t cause my health issues. Where do I even begin?

  • Posts: 227
    03/09/2018  09:29

    Hi Michelle, it sounds like you have lots happening in your life at the moment. We are here to provide you with a safe space to discuss how you are feeling and may be able to signpost you to further sources of information and support as well. Can I just check what dcf stands for? Are you in the UK? Looking forward to hearing back from you.