Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 I have a family full of skeptics who don't believe in diseases such as Fibromyaligia (my mom has it) so it was difficult to explain to them that Mito is real Still, most of them won't talk about it and I don't know if that's because they still don't believe or if they are in denial or scared. My dad seems to think that if I " just get up and get some fresh air " I will be alright. I know that he's in denial and is scared because he still won't accept the fact that my sister has MS and it's been many years. It's a very lonely feeling when you have no one that you can talk to seriously about this disease, condition, illness. whatever you want to call it. It's even lonlier to talk to doctors who have no idea what to say. Kind of makes me feel like a freak. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Listen to all of us mito's. You can always come here and talk, never feel lonely. Don't let anyone make you more depressed. You already have enough on your plate.As for doc's, I think if they can't treat it, they aren't prone to show human side. I fortunately have a great doc. Just pray, and keep a stiff upper lip about your family.don't give up hope, maybe one day they will, there is always tomorrow. --- DarleneASP@... wrote: > I have a family full of skeptics who don't > believe in diseases such as > Fibromyaligia (my mom has it) so it was difficult to > explain to them that > Mito is real Still, most of them won't talk about > it and I don't know if that's > because they still don't believe or if they are in > denial or scared. My dad > seems to think that if I " just get up and get some > fresh air " I will be > alright. I know that he's in denial and is scared > because he still won't accept the > fact that my sister has MS and it's been many years. > > It's a very lonely feeling when you have no > one that you can talk to > seriously about this disease, condition, illness. > whatever you want to call > it. It's even lonlier to talk to doctors who have > no idea what to say. Kind of > makes me feel like a freak. > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 I can understand those who's families don't quiet get it. My mom is diagnosed as well as myself-4 years for both of us and if she doesn't have the exact same " symptom " to the exact extent that I do-then whatever I am feeling is not real or can be treated with antideptessants-this is what she thinks. so it if frustrating when someone with the same disease wont belieive y0u. she also has started having very frequent seizures and her docs and family convienced her it is stress related and NOT mito related!!! she doesnt live near me and doesnt have a mito doc. it is frustrating to me that she doesnt even believer herself anymore! Just keep telling yourself-this is real-what i feel and go through is real! hang in there! julie Making things up I¹m in the early stages of diagnosis, and I¹m pretty sure some of my extended family wants to believe I¹m being a hypochondriac because the alternative is too frightening for them- and after spending a weekend with my mom, having her try to do everything for me so I wouldn¹t become too tired out, I¹m not sure that¹s not better... :{ We¹re a scientific/researching bunch, and from the moment the doctor said ³mitochondrial cytopathy² they¹ve all read everything they can get their hands on. The responses run the gamut from sheer terror to abject denial, and sometimes dealing with their stuff is more difficult than dealing with my own body and its various problems. My family is close and loving, and I need/want their support (especially for my husband and kids) but more and more, I¹m questioning my wisdom in telling them or anyone for that matter- Anyone else with similar experiences? Any ideas for managing? Kathleen > Yes, they use software to " attune it " to different chemicals, and > that software is muyo expensive. Amazing though, it was the first > test that made me think " wow, I'm not making this up " LOL... > > For those newcomers, many of us have had doctors and family and > friends question whether we were making up symptoms or being > hypochondriacs... > > Take care, > RH > > Quote Link to comment Share on other sites More sharing options...
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