Home Forums Chronic Dysphagia How little other people understand what we go through Reply To: How little other people understand what we go through

#4045
Katwoman57
Participant

I too, struggle with dysphagia on a daily basis and have for almost 9 years. From the outside, I look fine to other people, but the battle and suffering within are sometimes unbearable. My difficulty is in swallowing liquids instead of foods, unless it is something juicy like fruit or soup. I had several episodes while drinking water or coffee in which my larynx would completely close and I could not breath, cough, or talk. I just had to wait it out and eventually my throat would start to open back up. These events were so terrifying that I was afraid to swallow liquids in fear of it happening again. I went to and ENT and he discovered I had GERD which had caused inflammation of my larynx so that was probably why it was occurring. He put me on Nexium to heal the larynyx and sent me to a speech therapist because by this time I could no longer swallow properly. I could no longer swallow without concentrating on it and trying so hard not to choke. I went to speech therapy and did exercises etc until I could no longer afford it. It did not help. I then thought that maybe a hypnotist could help me. No help there either. I had to start taking anti-depressants because I was becoming depressed, anti-social and withdrawn. It is so awful to be so thirsty and not be able to quench your thirst. I am chronically dehydrated which has affected my skin and hair. I have a lot of UTI problems. I then tried going to see a clinical behavior psychologist to try and change the way I think about swallowing. I attended several sessions, with little help, but had to stop because of financial issues. It has now been almost 9 years and I still battle this every day. I have to get up an hour earlier than normal just to try and get 8 ounces of water down before I go to work. I don’t dare take a sip of anything in front of anyone. I am afraid of choking in front of people. When I eat, I can eventually swallow, but the food lays in the back of my throat until it “feels” right and my swallowing function finally kicks in. I feel that my swallowing muscles no long know how to work correctly. I feel like I fight this battle alone, that no one understands, and there is no one else who could possibly have this problem. I find myself watching other people drink a glass of coke, tea or whatever and I just wish so much that I could do that again!! I found this website and I am looking forward to being a part of it. Thanks for listening.