Nin Posted April 7, 2022 Report Share Posted April 7, 2022 I'm pretty upset today because I was in the shop and seen someone i knew and in conversation I said I haven't been out really anywhere as I struggle with walking. They then turned round to me and said "there's always something wrong with you". I said well its the same thing/problem (pots) its not like I'm saying i got a new set of problems. They have no idea of my struggles, how its changed my life. It just hurt that it was someone I know and made me feel like I moaning for nothing. Because they don't know how terrible I feel just be upright and I've got a firework of symptoms going off as I'm speaking to you but trying to keep everything together. Pots really is a hidden illness! Sorry to rant. But please someone give me some good advice on how to be more head strong and not to care what other people think! Quote Link to comment Share on other sites More sharing options...
TCP Posted April 8, 2022 Report Share Posted April 8, 2022 I know it’s upsetting and annoying. I would have told them that they were being unkind and rude that Its not my wish to be unwell and if they were in my shoes they would feel differently. Illnesses can affect anyone at any time and maybe one day they will have health problems. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 8, 2022 Report Share Posted April 8, 2022 I am so sorry @Nin, I too have experienced rude comments like that. Once I had to fly and can only do that with wheel chair assistance. When I came to the security check point I stood up so they could check me easier and the checker said:" here's another one using the wheelchair service as taxi - if you can stand you can walk". I was taken aback but answered if he would like to be responsible for me passing out halfway to the gate and then not being allowed on the plane. He just rolled his eyes ... Thankfully after 10 years of this my community, family and friends are aware of my limitations and no longer question me about it. But it took a long time because - like you - I appear totally healthy on the outside and could fool many people on a good day, but on bad days I hide in the house, so not many people see me when I am at my worst. Please do not take these comments to heart. There are many rude people in the world and if we let them get to us we could really get depressed. Remember - you did not ask for this, you do not deserve it and you are struggling every day to function. But people cannot see that, so it is a struggle only known to yourself and others in your shoes. Next time someone says " there's always something wrong with you" hold your head up and say: "Yes, there is, and I am proud that i am able to stand here and talk to you!" Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 8, 2022 Report Share Posted April 8, 2022 What i have found that works for me (remember that's me) is not to bring up any of my limitations outside of my kids and a couple of care providers. If the subject does come up outside of my circle i just politely don't answer and change the subject (usually works). Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 8, 2022 Report Share Posted April 8, 2022 6 hours ago, MikeO said: What i have found that works for me (remember that's me) is not to bring up any of my limitations outside of my kids and a couple of care providers. If the subject does come up outside of my circle i just politely don't answer and change the subject (usually works). Me too. I’m very private about it, only sharing with a few select friends and almost no family just to avoid this same situation. It’s hard to hide, and I don’t get to vent or ask for support much (especially bad since I can’t travel to appts or tests alone), but it’s been worth it for me. It’s particularly challenging since I look mostly okay, and my illnesses are not well known or understood. Quote Link to comment Share on other sites More sharing options...
Nin Posted April 8, 2022 Author Report Share Posted April 8, 2022 11 hours ago, Pistol said: I am so sorry @Nin, I too have experienced rude comments like that. Once I had to fly and can only do that with wheel chair assistance. When I came to the security check point I stood up so they could check me easier and the checker said:" here's another one using the wheelchair service as taxi - if you can stand you can walk". I was taken aback but answered if he would like to be responsible for me passing out halfway to the gate and then not being allowed on the plane. He just rolled his eyes ... Thankfully after 10 years of this my community, family and friends are aware of my limitations and no longer question me about it. But it took a long time because - like you - I appear totally healthy on the outside and could fool many people on a good day, but on bad days I hide in the house, so not many people see me when I am at my worst. Please do not take these comments to heart. There are many rude people in the world and if we let them get to us we could really get depressed. Remember - you did not ask for this, you do not deserve it and you are struggling every day to function. But people cannot see that, so it is a struggle only known to yourself and others in your shoes. Next time someone says " there's always something wrong with you" hold your head up and say: "Yes, there is, and I am proud that i am able to stand here and talk to you!" Yeah I can relate to the airport scenario, everyone was looking at me Like you said when you're bad you are home and no one see's you like that. Wish I would have thought quick enough to say something back. One thing I know having pots will make me a tougher person in the end! Quote Link to comment Share on other sites More sharing options...
Nin Posted April 8, 2022 Author Report Share Posted April 8, 2022 8 hours ago, MikeO said: What i have found that works for me (remember that's me) is not to bring up any of my limitations outside of my kids and a couple of care providers. If the subject does come up outside of my circle i just politely don't answer and change the subject (usually works). Well I've decided this is what I'm going to do as no one needs to know my business really. I think I only tell people because when people stop to talk I need to give them the heads up in case I need to go quick because I can longer stand Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 8, 2022 Report Share Posted April 8, 2022 @RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️ Quote Link to comment Share on other sites More sharing options...
Nin Posted April 8, 2022 Author Report Share Posted April 8, 2022 1 hour ago, Pistol said: @RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️ Thank you pistol!! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 8, 2022 Report Share Posted April 8, 2022 1 hour ago, Pistol said: @RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️ Thanks! It is wonderful to be able to freely share here. I kind of have a double life, but I’m used to it! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 9, 2022 Report Share Posted April 9, 2022 I would have said, "Yes, there IS always something wrong with me. That is the definition of a chronic illness. Some days are better than others and I can do more, but today isn't one of those, unfortunately." I'm lucky I can still get out is what I would say. Plenty of people who have what I have are homebound. Right now my med trial didn't work and I'm homebound. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 9, 2022 Report Share Posted April 9, 2022 6 hours ago, KiminOrlando said: Right now my med trial didn't work and I'm homebound. I'm so sorry! Hang in there! Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 9, 2022 Report Share Posted April 9, 2022 12 hours ago, Pistol said: @RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️ I will second @RecipeForDisasterliving a double life. It is a savor to be a part of a community were i feel normal instead of being looked down upon for being chronically ill. Quote Link to comment Share on other sites More sharing options...
mehaller Posted April 10, 2022 Report Share Posted April 10, 2022 I've had just three of those types of events. Twice from people I have met only two or three times socially - friends of friends stuff. First time was in the grocery store while I was letting the cart hold me up - I told the gut to walk 100 yards in my shoes and get back to me. Second time was in the hardware store where I had to grab a five gallon pail and flip it upside down to sit on, and I told hime to take a couple dozen blood tests, see six specialists get irradiated five times and still not have a definitive diagnosis - and get back to me. Third time was just recently when waiting in line for a restaurant (yeah - a post COVID outing) and I had to ask a youngster for his seat on a bench. Twirp nearby - perhaps related - asked me what my problem was "ya look healthy enough". I told him to look up Postural Orthostaic Tachycardia Syndrome or Dysuatonomia - and get back to me. Next time will be much more truncated, beginning with go and ending with self. We're not on this earth to take garbage from people, and those folks need to know that. Find your own voice. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 11, 2022 Report Share Posted April 11, 2022 These stories are exactly the reason why Dinet exists - to spread awareness and provide information about Dysautonomia. I have already referred people to this web site to help them understand why I cannot do what others can. Those that actually looked it up responded with "I never knew that was a thing!" If people say they cannot do something because they have COPD or heart failure people get it. In my case I often just tell people I pass out a lot and take seizures - those symptoms they can grasp. The other 59 symptoms I simply dont mention. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 11, 2022 Report Share Posted April 11, 2022 Oh yes, I’m always hearing nosy people watching me eat say "OMG SALT IS SO BAD FOR YOU!!!". In those cases, I might tell them I’m on a high salt diet and that I have low BP. I do sometimes have to admit I "pass out" if it’s coming. I put salt on ice cream, and everything else, so people notice. I do crave it to an extreme. I carry it everywhere and pretty much don’t eat anything without it. Mind your business! I could tell you some other things you are eating that might be bad for you, but I don’t know your medical history, nosy people! Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 11, 2022 Report Share Posted April 11, 2022 2 hours ago, Pistol said: These stories are exactly the reason why Dinet exists - to spread awareness and provide information about Dysautonomia. I have already referred people to this web site to help them understand why I cannot do what others can. Those that actually looked it up responded with "I never knew that was a thing!" If people say they cannot do something because they have COPD or heart failure people get it. In my case I often just tell people I pass out a lot and take seizures - those symptoms they can grasp. The other 59 symptoms I simply dont mention. This is the whole reason i don't normally bring up dysautonomia outside of a small circle of people. I did refer one of the nurses to lookup dysautonomia when i was in Cardio Rehab as she was having a hard time grasping why my bp's were so liable, why i was coming in all bruised up and upping my salt intake and why my cardiologist wasn't pushing down my blood pressure even more. 51 minutes ago, RecipeForDisaster said: I put salt on ice cream I have never tried salt on ice cream. I could see this working (little sweet and salty) I will have to give it a go. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 13, 2022 Report Share Posted April 13, 2022 On 4/11/2022 at 7:27 AM, RecipeForDisaster said: Oh yes, I’m always hearing nosy people watching me eat say "OMG SALT IS SO BAD FOR YOU!!!". In those cases, I might tell them I’m on a high salt diet and that I have low BP. I do sometimes have to admit I "pass out" if it’s coming. I put salt on ice cream, and everything else, so people notice. I do crave it to an extreme. I carry it everywhere and pretty much don’t eat anything without it. Mind your business! I could tell you some other things you are eating that might be bad for you, but I don’t know your medical history, nosy people! I can't tell you how many times people argue with me over my salt. The local hospital forces a low sodium diet on you when you are in there. I finally just tell people that my Cardiologist has written me a prescription for salt pills and that stops it cold, but the hospital still will not give me salt. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 13, 2022 Report Share Posted April 13, 2022 @KiminOrlando - same here, every time I am in hospital I am on a heart friendly diet without any salt - while they are pumping saline in me! So I carry a saltshaker with me wherever I go! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 13, 2022 Report Share Posted April 13, 2022 49 minutes ago, Pistol said: @KiminOrlando - same here, every time I am in hospital I am on a heart friendly diet without any salt - while they are pumping saline in me! So I carry a saltshaker with me wherever I go! Haha! There are 9 grams of salt in a liter of saline! I have a travel salt shaker in every vehicle, purse, bag… I find it useful for one meal or so before I have to refill! Sometimes I just crunch on the salt. I enjoy it, so I’d rather do this than take capsules. Quote Link to comment Share on other sites More sharing options...
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