I have trouble talking to others about my health issues
Posted , 6 users are following.
I am 33 years old. I contracted Lyme when I was 12 and a few years later I was diagnosed with CFS. I have spent more years struggling with illness than I have healthy. 9 years ago I discovered a gluten-free diet helped manage a lot of my pain and I have spent the last 9 years functioning at a consistently higher rate than the years before. But while I appear healthy and active and unstoppable to my friends, my body is constantly working against me. I'm frustrated by it. Im tired of dealing with it and thinking about it and talking about it. I have tried to make it less of a big deal by telling my friends what I am going through. But it freaks me out! I hate talking about it! It doesnt change anything! And if they act like it isnt a big deal, it destroys me. Does anyone else battle with the need to hide your disease and the lonliness of not being able to open about it?
0 likes, 4 replies
littleme1969 gina42275
Posted
I have ME/CFS and Hyper Pots.. my POts started after glandular fever when i was 20 and the CFS licked in 4 years later after almost dying in my second pregnancy. I have been ill my entire adult life even though i was only officially diagnosed 5 years. I found it impossible to have a normal life and over the years found all my friends pretty much drifted away. People dont want to hang out with the sick person, they dont want to be reminded of what could happen to them , so they avoid it. I have found that healthy people dont want to talk about it hear about it so you end up pretty much on your own, even family prefer not to mention it. Its like .. so you ill.. we know.. get over it and move on..like you can make your self well just by thinking about it. Im 48 now and just dont bother anymore i founf it easier to talk to others who are in the same boat, i use groups on here and facebook, then at least you dont feel so alone. Coming to terms with the fact you life is limited is very hard, and especially when you see others having their lives, doing things.. etc. and your expected to just sit home and be happy with that. I have found the mental part much harder to deal with than the physical bit. I dont hide it anymore .. if people cant deal with it..then thats their issue not mine, i have also stopped trying to be normal and do normal things as my body just wont do it anymore.
caitlin39841 littleme1969
Posted
littleme
I think your experience reflect many ppl's experience with a chronic illness but especially so, those with ME/CFS and Lyme. there's a lot of grieving to be done in the wake of ME/CFS/Lyme. having any of these conditions means a prolonged breavement - a brevement for a lost career, lost health, lost life, even lost holmes, lost friends and sometimes lost families. sadly all get taken away from us. many ppl. are accepting and adapt and make some sense of their situation. other don't find any meaning or purpose in the sentence. it's good that there are forums like these to provide some support & connect with ppl who understand our predicament. I do hope that your new up front way of being with humanity is less stressful and who knows others may understand in time and be more supportive.
all good luck with the future.
KPD gina42275
Posted
Gina,
When I was first diagnosed with this disease, I tried telling my friends about it. Unfortunately, I have found that they have such a difficult time understanding and often find it hard to believe becasue many of us "look healthy." In the past years, I've decided to try to hide my disease from most people. I do have a handful of very close family members and friends who I can be honest with-probably less than a handful, but that's all I really need.
Also, when I am feeling good and when I'm out with friends, I find it easier to avoid the topic and simply escape the fact that maybe I'll wake up the next day feeling bad again. When I'm feeling good or better, I want to value that time by talking about positive things. Does that make sense?
I teach part-time, and none of my co-workers know (I've gotten very close to many of them) that I'm sick with CFS. If I'm having a bad day, I simply blame it on not sleeping well the night before. I don't think hiding the disease is a bad thing.It takes the focus away from "being sick." And we all know that a positive attitude can help.
However, I do think it is important that you have at least 1 or 2 others that you can share the truth with. If it isn't a friend, a therapist is a god source. You can't suffer alone in silence, but you can be selective about who you share the truth with-who you can trust. I don't think there is anything wrong with that. Good luck and hope this helps. KPD
Glad to hear a gluten-free diet has helped you! I'll have to give that a try :-)
jackie00198 gina42275
Posted
Gina: I constantly battle with knowing how much to disclose, when, and to whom. Sometimes we have guests at our house for musical events. First, they see me lying on a chaise. So I feel weird about that. Do I mention that I'm lying down because I have ME/CFS? Or do I just let myself appear weird because I'm not up and about? Then there's my friends, what's left of them. The other day, I was talking to my cousin, and mentioned that I'm housebound. In the next moment she asked if I'd been to visit my mother lately (she's 120 miles away)--a 2 1/2 hour trip by car). I got angry, thinking "What part of housebound do you not understant?" So do I explain my illness further to her, or keep quiet. It's all very exhausting.