I don’t usually go into details - with friends but my husband hears about my symptoms/details.

My close friends do know I have suffered for years but don’t know all that has happened.

I don't volunteer information until asked. Early on in the illness I tried hard to keep it private or change the subject thinking this was a short-term thing. Now, I have a different perspective. I don't care anymore. I don't volunteer information, however, often it becomes impossible to avoid. For example, here in the west, it's a general principle people define themselves by their work. Inevitably, the question "what do you do" comes up. It's impossible to answer this without bringing up illness. So at that point I'm just honest. I don't go into detail, but I let them know I was bit by a tick some years ago and I have experienced progressive chronic illness since. Usually people are somewhat confused and stop questioning there. If they are curious and ask more questions I will be honest and transparent. In the western culture of strong individualism and strong self-identification with career and working yourself to death I'm sure this has led to judgement against me in the negative sense. During my first few years of illness, when I still prescribed to a similar perspective of life as those possibly judging me, this bothered me. However, as time as passed, and my acceptance of my condition along with a clearer perspective of reality has emerged, I am not bothered by this anymore. In fact, from personal experience, I can say being anxious and stressed about what others are thinking of your illness, or whether they accept it as valid, is detrimental to healing.

Lymie24 said...
In the western culture of strong individualism and strong self-identification with career and working yourself to death I'm sure this has led to judgement against me in the negative sense.

True....true!!!

A friend of mine who has Chronic Lyme once state sarcastically:
"Being Sick is For Losers !!"

In today's world a lot of people subconsciously subscribe to this belief........

Rob

the real problem is - that unless someone has experienced it - they just will not understand it

people i have been close to for decades - and know me very well - even when i have explained it to them struggle to understand it - its not a conscious thing

one who has high blood pressure that often spikes because of stress around his doctor measuring it - see that his illness has a psychosomatic element and assumes my illness is the same as he has no other way of understanding it - so says things like - what would happen if you just went out and went to work ....

another who had a nervous breakdown from work stress at a young age - see it as the same thing - i just need to do what he did to recover

another has type one diabetes - its mostly under control but he feels a bit rough at times and is concerned about his future health - but as long as he manages his diet and takes his shots - he can decide to go for a 5mile run or work 12hrs days - its probably a bit harder for him than most - and he assumes this is the case for me - i just need to buckle down and do it etc etc

its the closest thing in their frame of references to liken it to - so it becomes that thing for them

it used to frustrate me more - but this is just the way human beings are - its not really their fault they haven't had Lyme and hence cant understand it - or understand it in terms of the closest thing for them. i would likely have been just the same if i had not experienced it myself.

in fact i recall going on a skiing holiday with a large group some years before i got ill myself - one guy stayed in the chalet the whole time complaining of feeling ill / off etc said this stuff had been happening to him for a while - i just thought he was a weirdo and he should snap out of it. looking back he probably had something like lyme.

I have "only" been sick for 6 years. I have lost, and I use the term lost in the sense of not having a close relationship anymore, with all my closest friends except for one. The one that still keeps in touch doesn't live close anymore, but we still text and call each other. The handful of others I rarely have contact with. I don't attribute any malice to their actions. It's almost like when someone close to you dies, and you are sad, but over time you move on. The only difference is I'm not dead lol. I got sick when I was 29. People around my age were already marrying and having kids. So some of this was inevitable, but the bottom fell out with Lyme.

Similar to many here, at the beginning, I got a lot of "get over it" comments. I agree with Garzie that many humans have a hard time having compassion for what they can't understand. This is particularly true of the younger generation that has grown up in the comfort of developed countries and hasn't yet experienced the suffering and sorrow that comes with being a conscious being. I was the same way before I got sick. When I was younger I would hear descriptions such as illness, joint/muscle pain, fatigue, back pain, etc. etc. and think that doesn't sound that bad. That was pure ignorance and arrogance. My compassion is a million times greater now than it was before I got sick. Even if I don't understand exactly what a person with a specific illness is going through I understand the suffering behind it.

Same here......10mg dose of Lexapro.

Just make me comfortable in being miserable.

I am in the process of weaning myself off of it - it stays in your system A LONG TIME !!

Rob