Invisible illnesses
Hi I have been having trouble due to invisible illness. Sometimes I try to make plans with other people,but feel so weak and tired on the day of the planned event that I have to cancel. I tried telling people about my illness,but they don't believe me and have never heard of it. So I stopped giving a reason for cancelling and this seems to leave them even more bewildered. How do others handle the problem of when and how to tell people about your invisible illness?
@adventurousBranch3786
It is very hard that's for sure. Trying to explain can sometimes make things more confusing and difficult.
Listening .... One Step At A Time
@MistyMagic It sure does.
@adventurousBranch3786
I'm so sorry to hear that you are going through this! I'm not a therapist, nor am I a physician. But it does sound as if you have noticed a trend- that your invisible illness occurs after you have made plans to interact with someone and now you must go through with it? The mind and body have a powerful connection. You could be experiencing what is called a Psychosomatic illness. Perhaps you are experiencing social anxiety or agoraphobia (essentially the fear of going outside, leaving your home). It certainly would be worth the time to interact with a therapist or a physician who could then refer you to a therapist if need be. I hope this helps! and *hugs* 
@PhoenixArisen Thanks for trying to help ,but I don't have a psychosomatic illness,social anxiety or agoraphobia.
@PhoenixArisen I have a physician who treats my illness,but there is no cure or reliable treatment. Thanks again.
@adventurousBranch3786
Again, I'm sorry you are having to go through this and it is great news that you have the care of physician! I hope things get better! Best wishes
@PhoenixArisen There can be a bit of an issue with trying to make those connections. During my sickest years, simply putting in the effort to going out - getting showered, getting dressed, packing up an emergency med kit, oops I forgot to write down the address gotta walk to another room again to write that down, etc. would use up a significant portion of the energy that I had.
Also as for seeing trends, I didn't see anything here to suggest that the physical problems are when plans are made with people compared to other times. For me I could say I'm often too tired to go when there are events at the lake and it makes me sad I miss out. That doesn't mean that I am tired more on days where there are events at the lake compared to the days where there are not; I'm just often tired so that's going to coincide with many things.
I agree noticing triggers is important, but there's also the caution side of that too - especially when symptoms are frequent it can be easily to falsely conclude some triggers. It can also be easy to blame the wrong thing on a trend - maybe I start having more symptoms when I see a particular friend. Perhaps we had a fight years ago, so I start to think that maybe I still have anxiety surrounding that which I didn't really pick up on and it's being expressed in a psychosomatic way. In reality though, that friend smokes and has a dog. So really it could be 3rd hand smoke and dog hair that's the trigger.
As it is, I find doctors are pretty quick to suggest psychosomatic issues when there are other explanations that make more sense, but don't get investigated properly.
@AffyAvo
I just so happen to agree with you completely! In fact, when I noticed that you were contributing to this persons post, I was most happy and releived! I think you would be one of the very best contributors to this persons post! I'm glad you found the chance to do so.
I try as best I can to help but I did preface this with "I am not a therapist and I am not a physician". There was little information given and I guess when it comes to forum posts, we just help as best as we can. I won't say that I am sorry for trying. I'll never be sorry for at least trying. But I think your trying would be better than my trying in this instance!
Go team! Go 7 cups! And go @AffyAvo! In addition, many thanks for all of the contributions you make around here. I see it. I really do! *hugs*
Correlation does not prove Causation.
@PhoenixArisen Hi, Sorry about that. It's true not everyone has heard of the term invisible illness.I will try to explain .Many people who have chronic illnesses and disabilties may not use a wheelchair, cane or walker. They may have illnesses that are not well known. As a result some people have trouble understanding the severity of their disability. I don't always have to cancel , but when I do people have trouble understanding this. I hope that this helps.
@adventurousBranch3786
I understand. My son was born with Sensory Integration Disorder (Dysfunction). It was hard to explain to some people that he had a disability. They assume that someone with a disability looks a certain way!
@AffyAvo
Affy I would have liked in another life to go to the lake with you...I feel the same "tiredness", but maybe together we would have succeded in going to the lake events together in calm and friebdful bliss...in another life...(i would have liked to dive deep in tge lake and you looking worried for me to come out 😂😂😂, just joking😉)
Your knowledge is very precise and extensive Affy, you are very documented in your info on the site...I hate to see you aways so serious and busniness matter of fact...I wish you could smile😊🤗
@AffyAvo this is an excellent explanation. thank you
I find for some people, it's just not worth trying to explain. If I have to cancel on these people, I apologize and leave any explanation minimal. Sorry, I don't feel up to doing that today. They can choose to respond to that how they wish.
Luckily I do have people in my life who do want to understand. With those more open, a quick explanation about what your condition is or how it effects you can be helpful. I also stay open to answering more questions.
@AffyAvo Thanks this helps.
I'm sorry to hear that you're struggling. I have fibromyalgia/lupus and yeah, the constant exhaustion is terrible to try to work around. My solution was to just be super up front and open about my illness at the beginning of an acquaintance. It honestly took a long time to get where I am but I've found it makes things easier when you just start out with a brief "yeah I've got this thing so sometimes I'm too sick to do anything". I always leave the conversation open if they wanna know more but just a short comment at the start can really help with understanding and accomadating down the road.
@Canary45 Hi, thanks for your help.
I don't. To able-bodied people invisible disabilities don't exist. If you're not in a wheelchair they think you're lying.
@tluper6491 I've experianced what you say many times.
@adventurousBranch3786
I'm really sorry you've had to deal with that. I have too to the point even I barely consider my own disability valid anymore. Another poster mentioned being called lazy for it and I've had that too which is extremely insulting. Not everyone thinks like that but enough people do that if I don't think they'd understand I just don't bother talking about it. My disability also has a long story and a lot of baggage with it so it's not something I can explain quickly or easily even if I wanted to.
@tluper6491 I've stopped trying to explain to people who don't understand. I'm learning to explain only to those who understand or are least open minded. Sometimes I attend group discussions in disability here at 7cups. I have found it helpful to feel less alone. They have a group discussion on Wednesdays at 1pm est in the disability chatroom. I hope that you can make it sometime
@adventurousBranch3786
It wouldn't make any difference. I need somebody to love me. That's never going to happen as long as my body is defective. Talking about my condition at this point just makes things worse.
@adventurousBranch3786
I had people call me lazy or procrastinated because of my depressiomdraining me both physically and mentally...of course I do not feel like doing anything or participating in events even though I hurt that I do not do so...but it is this "heavy weight" than pin points myself on the bed and grounds me and isolates me... it is very detrimental and it's a double evil effect of depression....
@adventurousBranch3786 I am sorry you are going through this. I can relate. I used to always say no to going anywhere because my social anxiety would blow up so bad even thinking about saying yes to going somewhere. But lately my therapist has me working on saying that I am indeed interested and that I will do my best to go.... rather than an outright NO. It may be a bit different because a lot of people in these situations know what I am struggling with, but it has made me feel less anxious to say maybe instead of always no. I feel a little more control in that I will show up if I am feeling up to it, but that I may not if I don't... but I have not comitted myself eitther way. I hope that helps a bit :-)
@nitelad
A bit, every tiny bit counts...just so you know...your bit counted for me...
@feelitinyourbones I am so glad! You are not alone :-)
@nitelad
None of us are if we care...
@nitelad Thank you
@nitelad thank you for your help.
Thank you to everyone who tried to help me here. I had a situation with this problem yesterday and remembered this post and all the helpful comments.