To tell or not to tell?????? In not sharing about my limits in the past in retrospect, maybe hasn't helped me as much as I thought???.

[oaktree]

While protecting my privacy has been good, I think that it's also cost the potential of some good friendships... and I'm missing out socially too.!! Time for a change. Selective disclosure?? Small town living has it's challenges. But I think my emotional wellbeing is way more important than any gossips from gossipy people.!!

[misty14]

Hi Oaktree

Interesting post from you. I have always been a very private person but have recently had to be more open about my health and life and I've been heartened at the reaction And help I've had from friends and colleagues. It hasn't been easy to change but it's definitely worth it!. Go for it!. I've made new contacts too. X

[sharonleane]

I know how you feel OakTree. I live in a small village and i'm not one of the locals but am outsider that moved in 15yrs ago.

Small local communities are very "clicky" and in all my years here, it's not very many people who want to give you the time of day ..let alone be a friend.

I have been through a very rocky separation from my husband who is also not local and all of our dirty washing has been aired in public..as he felt this would drive me away..so he could stay.

I've stood my ground and the house is now mine but he's convinced everyone here that i'm fat lazy thick and work shy so I'm now being bullied by them. No one is willing to help me and I'm very much alone. If I'd have had my way they wouldn't know a thing about me. I would move but I joint own land with ex and keep ponies ..so its not as easy ..divorce needs to go through first which he's making difficult. My life is hell right now.

[Belee]

Completely understand your not wanting to tell people..... I felt the same - hated the idea of people feeling sorry for me! .... Only people I told was my husband and kids. However last summer I lost two thirds of my hair ( and had no alternative but to shave the rest off) as you can probably imagine the gossipy mums at my kids school gates immediately jumped to the conclusion that I was dying of cancer. When this gossip reached the ears of my 3 kids it was horrendous. From that point on, I've been open and honest with people. If they ask me what's wrong, I tell them quite bluntly. I've found that my friends and people who matter had an idea something was wrong but didn't know how to help. Now they know, they have been a great source of support. If I'm having a flare there's always someone willing to pick the kids up for me rather than me trying to struggle. Obviously there are still the odd few people who will gossip and stare but don't give them a second thought!

Take care xxx

[mstr]

Hi Oaktree...good question and can completely relate as I have had this dilemma too and live in a small town. So for me selective disclosure is the way forward. I tell friends whom I know well and will understand. This helps massively as where possible I leave planning in a coffee date/or trip out in the car until a few days before/day before so that I know I can manage this. Of course it can change daily and sometimes I have to say look can we make it an hour later as I'm running behind schedule due to slow start/fatigu/aches etc.

It's a small town I live in and people are friendly but inquisitive so because I do not want lupus/UCTD to define who I am I just make small talk. At times when people ask such as when I am picking my grandson up from school and I have clearly limped (inflammatory arthritis) then I say I have lupus and if they say what is that ....I say briefly it affects my joints/muscles and I have fatigue. The conversation usually goes along the line of ....Oh is that like rheumatoid arthrities?....to which I say they are both autoimmune and there are similarities. Then we move onto how their child is and general chit chat. If my husband is doing a run for lupus...I will say then and again say that it's for lupus.

To those that know me....they can see the change (I don't have to say it). Visibly I look no different but I have aches/pains and terrible fatigue and I no longer work or charge around as I did two years ago.

With friendships they are in two categories......one or two that know really well the impact that this has on me......and then a handful of other friends that know but it's hard to completely define to them what's going on when we meet for a lunch date every month (such as ex work colleagues). I also don't want to exhaust friendships with my moans/worries and am interested in what is going on in their lives too.

So the bottom line is for me it is a balance. Some people are only passing pleasantries and they don't necessarily need to know as conversation is usually kept light. With others they really know and understand and there is a group 'in the middle' who understand that it's there but perhaps don't fully understand the impact. This is because I can see their life is busy/they have their own issues/problems/family life etc and I don't want it to be all about me. This approach is one that works for me. It stops me from getting upset by comments from people who may make a 'glib' comment. It enables me to talk to people who I know do understand (close friends and family) and others who I value as friends/colleagues but do not want to overburden.

Small town people can unfortunately gossip....my condition could then be described as not what it is in passing. If they see me one day and I'm fine....I then don't want the "Oh but you look good" or "You looked fine yesterday". So I have learnt the above approach works for me. I still raise awareness when I can but for me ...it's selective telling all the way. Hope this helps xx

[watercolour]

Hello,

I can identify with you through this. For me there are 2categories of friends. Because I look so well that causes much gossip as I am simply not believed. Some days I struggle to even get up in the morning. There are some whom I never share with. One group to which I belong is a knit and natter group, they have been an amazing source of support. As they can see the disabilities I have. Even family don't understand, there is so much more that needs to be learned through this and the total suffering behind the scenes. I too live in a village but where there are hobbies the greater the empathy. I am also in an art group, they are kind. I am afraid it is such a lonely walk. You take care love Watercolour

[charlie007]

I know how you feel,its a difficult one,some people will never understand because they just dont want to,its like if they cant see it ,it does not exist.I have been really suprised at well educated people ,that have no empathy or compassion(employers).I have found when I am ill its hard to hide ,and its more of a strain to try and hide it,I would rely on your gut feeling its usually right.Take care x

[Hidden]

It seems a lot of us are 'villagers', as I am too. My problem is that once I get going in the morning, I will usually pop to the village to do any shopping. This is usually my best time of day, fitness wise. So most locals see me at my best. If I meet anyone later in the day, for some reason, they are shocked to see me with a walking stick, and looking like,'death warmed up'. This is when I get the questions, and they always say, ' but you looked so well the other day'. To people who do not know of lupus, I just say I have arthritis. To friends, I now know who they really are. I tell at a need to know basis. It's true, you like to keep certain aspects of your life private, but then again, you don't want to 'cut off your nose, to spite your face'!!!!!!

[oaktree]

Thank you, to all of you, for all of your replies. It's helped me understand more clearly about the choices in disclosure and the similar challenges that can face us all. Reading about the 'strain of covering' up reminds me its an extra burden that's not worth it. To go with gut feeling in terms of disclosure... interesting.. I'm going to try it.!!

In this last week I'ave spoken more openly with the friends I already have. Thats been really good... a relief really, allowing myself to be more authentic. Yea for courage and resulting personal growth.!! Thanks again for the replies.