Communication issues

[magSLE]

Hi everyone, I'm posting this in the hope of getting relevant advice.

Last Fri, I went out for the 1st time in a while with a friend. We went to a Italian restaurant in Covent Gdn that had a comedy club.

My friend & I were convinced by the promoter to go to the comedy club. We sat & waited 45mins for start, by then my anaemia kicked in, the meal digesting & my ladies monthlies (which I hadn't had for mth) kicked in & made me sleepy.

I was yawning & falling asleep. The promoter was the 1st comedian & targeted me & said "I hate m/c black bitches who just come to look at me & don't get involved". He was staring at me. I've got hearing problems & wasn't sure about what he'd said. My tiredness led me to be confused. He called me a bitch again but I was too tired & low on energy to respond. He asked me if I thought the last joke was funny. I told him "I didn't hear it all as I've got hearing problems & you chat quickly (Russell Brand style) that's why I'm not responding". He said "You can't hear properly & I've been picking in you. I'm such a dick". I replied "Yes you're a dick".

I deal with this a lot with strangers when I don't react the way they want me to (cos I'm unwell). I've had anaemia for 7mths now, it's sucked the life out of me but after 2mths of feeling exhausted, I can socialise every now & again. The fact that because I don't laugh at people's jokes or not very chatty is obvs their issues not mine. I stopped talking to strangers about my health as I have 4 conditions, it's complex & draining for me to time about it. Besides if they don't care about me, what's the point?

Awkward interaction with people is more common for me now, cos of my health & I take a lot of meds.

When I'm well, I don't mind educating people about Lupus but I'm low on energy at the moment.

Do you talk to strangers about your health conditions when you feel unfairly judged?

Some strangers are emphatic & some just don't care. Right now, I'm just trying to cope but situations like that are confusing to me.

Do any of you experience similar situations?

I don't usually allow the view of others but I'm unwell so I'm feeling hyper sensitive

[Scbinfla]

That's unfortunate, you went to be entertained Not expecting to be made fun of for the sake of a laugh .... Probably best you were slow to get it because otherwise it would have been even more uncomfortable for you . I'd sit in way back next time . As far as sharing your lupus condition I find usually most people don't know what your talking about ... I might say my arthritis is bothering me if I feel I'm achy and slow ... Everyone knows that . I might explain if close friend or I thought someone was interested in learning ab it .... But I find I end up exzausted just trying to e xplsin it to someone who prob doesn't really care , I end up feeling like a crazy lady all wrapped up with my aches and pains . Don't let his rudeness stop you from going out and enjoying time with friends . The entertainer should be more careful who he choses to target in audience . Feel better and take care of yourself

[magSLE in reply to Scbinfla]

Thanks Scbinfla for your reply! I used the comedy show scenario cos it's the most recent thing that's happened. I'm so sensitive at the moment cos it happens to me a lot so it's leaving me confused but I'm just gonna focus my energy on my health & thinks that help me feel good. I actually felt sorry for the guy, he's obvs got issues.

[Purpletop]

I'm the reverse - I happily tell everyone about my lupus even when they don't want to hear. As I start first when they don't expect it, they're on the back foot and all they can say is that they're sorry for me and then shut up. If there's some idiot who, regardless of my saying how difficult life is for me with the lupus, manages to thoughtlessly make a remark about how I should get out more or something similarly inane, I just 'jokingly' say 'don't make me wish you get lupus so that you understand what I'm going through' and that stops it all - people are amazingly superstitious.

[magSLE]

Interesting approach Purpletop! Thanks! My anaemia leaves me so drained that I can't speak & just want to sleep. I spend so much time home alone, sometimes I just need to get out. I'm going to let people's ignorance stop me from going out but everything seems to drain me at the mo'.

[misty14 in reply to magSLE]

Hi Magsle

Horrible experience you had!. Are you having the aneamia treated?. It can be very draining but is treatable. Hope you feel better soon. X

[magSLE]

Hi misty14, I've had anaemia for 7mths cos my body is not absorbing iron. I take 3 tabs of Ferrous Fumerate per dy but my body is not really responding. I'm able to function more than at the beginning. Med pros told me I have organ leakage/abnormal bleeding.Recently I had an Endoscopy & Colonoscopy but there no bleeding was found. My med pros don't seem to know what to do nxt as waiting for biopsies. My haemoglobin levels are going down despite the high intake of iron. I eat iron naturally everyday but it's not improving. I'm getting frustrated about it now & it's affecting my energy, my mind, my social life & relationships.

[kazp]

I take it you are on a high iron diet or iron tablets?

We are easy to pick on and some pick more as they get a reaction. Humans are cruel.

Your focus has to be you your health and happiness, safety and wellbeing.

[magSLE in reply to kazp]

Very true kazp! I'm generally a positive person but the negative way some people respond to me when I'm unwell always surprises me & leaves me confused. I have iron in my diet & the tablets. I'm focused on my health. I've realised people (incl my friends & fam) just don't understand the physical/mental challenges of living with a variety of health conditions so I'm just going to get on with it

[kazp]

have you taken any of them to an appointment with you? drs can be great at explaining symptoms etc, even the GP?

You can locate leaflets on a lot of symptoms online, and used to be able to at clinics?

You need your F & Fs support with this, not sympathy, empathy and a little understanding goes a long way, as long as its NOT - 'I know how you feel@ cos they bl**dy well don't! That's the one I wont under no circumstances tolerate!

[magSLE in reply to kazp]

Kazp I've tried. They make excuses not to come to hospital with me. I've tried explaining about Lupus but they just won't accept that I've changed due to my health. They hardly ever see me ill. I often wonder if they think I'm making it up. It's actually easier for me to cope alone most of the time, without having to comm when I'm unwell/ill. You're right they don't understand how I really feel cos they're not feeling it.

[kazp in reply to magSLE]

You've a coping mechanism and that's great.

It's very difficult to explain lupus to those that don't get it then again do those that have it get it?

[magSLE in reply to kazp]

I'm learning this.. My health conditions have been active for the last 3 yrs & have been life threatening, random & shocking. I've had to take extreme measures so I focus on my life & it helps me to cope. I realise this is. Important to

me. I've had counselling which helped me understand myself better. Guess I need to do what I feel is right for me rather than anyone else at the moment. Still confusing at times but hopefully I'll learn to cope better regardless. Positive blessing to you kazp!

[kazp in reply to magSLE]

I've lived with Lupus, I don't like to say suffer as its such a negative term for 32 years, all I have ever know is lupus! I do have vague memories of my short non lupus life, but I try not to dwell on them. I like to think that I can, not I cat, and I WILL TRY, even if it doesn't I had a go!!!!

Remember you are your focus and only you.

Smile every day in a mirror x

[magSLE in reply to kazp]

Hope, love, honesty & determination will keep us going x

[Cann]

It seems to be the survival of the fittest from my experience and that's why I hide my problems and spend a lot of time alone, but I am lucky to have a husband, daughter and home and friends who do understand.

As far as what you were subjected to in the name of comedy - it was prejudice and down right insulting; you are very brave to take the attitude you took; I would have walked out!

The entertainer should not have been targeting anyone in the audience; he is there to entertain them not target them and a complaint to the management might even be appropriate.

Sad to think there are people around like that, but there are so many good people and I find it is best to search them out and ignore the rest.

Many if not all Lupus sufferers are sensitive people from my experience and we should not be treated in this shameful way.

Keep positive and ask your angels for help and strength to accept your sensitivity as a gift and to be able to use it in the right way - you'll be surprised how help is there if you ask. I use this all the time including recently when I was treated unfairly by a dentist - she saw me as a vulnerable easy target, but I didn't let her get away with it and I let her know that just because I have health problems, I am not stupid or an easy target, but that was because my angels were guiding me and telling me what to do.

[magSLE in reply to Cann]

Cann I agree. The world is about survival of the fittest. I'm so aware of that when I'm not well or lacking energy I usually stay in cos' I don't have the strength to deal with negativity & it brings me down so I just stay away from such situations. That situation was part of a Groupon deal. I received an email asking me to comment on Comedy, pizza experience so I did. I added that the "comedian" has obvs got issues & projected it onto me. Not funny at all. I was curious if anyone on here has similar experiences

[Cann in reply to magSLE]

Sometimes we cannot avoid these situations and may be they are there to make us stronger. I too take time out when feeling bad because there is a lot of negative energy out there and we don't need it when in a flare.

Yes, many have such experiences, I am sure. I attended many healing groups since becoming ill and I learnt so much regarding how to deal with negativity, but it all takes time and energy, I find. Talking with others helped me to realise that others experience similar situations and we are quite normal.

[magSLE in reply to Cann]

Hi Cann, it's been great to be able to come to this forum & discuss health/related issues. It's been insightful, healing & refreshing

[Cann in reply to magSLE]

It is the one place we can be truly ourselves because I find most doctors and most people haven't a clue what we go through - not their fault; they just haven't experienced it so how can they understand.

[magSLE in reply to Cann]

I can't explain the pain to them. Even when they see me ill/unwell, they don't believe it so I just focus on coping with my health issues.

[Cann in reply to magSLE]

Best way as it can just be a waste of time and precious energy otherwise!

[ramada]

So sorry to hear this please don't get put off going place..there are so many ignorant ppl out there who could do with few slaps across their face..my head boils when I hear things like that but please don't lose your self steam..

[magSLE in reply to ramada]

Ramada I've been convincing myself the same thing otherwise it will negatively affect my self esteem. It's great to read it from someone else so thanks.

[winterbaby07]

I can relate... I've missed out on almost everything outside of my home this year due to that reason... And people really don't care.... But I agree with what ^^^ said

[magSLE in reply to winterbaby07]

Winterbaby07 thanks for your honesty. It makes this rd less lonely. Guess we just have to accept & find positive ways of coping ourselves not for others. It's all new to me but I'm learning for the better. I can't afford to absorb other people negativity so I'll mentally have to just decide not to, even tho my emotions tell me otherwise. I don't even have energy to react at the mo' which is just as well

[achydunlin]

I think that's awful. I never sit at the front when I see a comedian, but then again I wouldn't expect the so-called 'comedian' to call me a bitch. What a complete nob he is. He's lucky really, because if he'd have got me on one of my what my daughter calls 'Satan days' I'd have jumped onto the stage (aches and pains etc notwithstanding), grabbed the mike and called him all the names under the sun! Hope you are okay. I haven't been diagnosed yet with lupus, but I have educated quite a few people lately about this awful disease.

[magSLE]

Smellydunlin - I wish I'd had the energy to just get up & walk out. The comedians got issues but so have I. I've forgotten about him now but it happens a lot with strangers. My health is too complicated to explain to someone who doesn't care about me. I've informed his employers not with the hope of getting him into trouble, just in the hope he'll realise not everything is about him & attacking a stranger is no joke. Anyway it's great that educate others about Lupus. It's a very complicated & individual condition but hopefully understanding will help us to live more positively. Bless you!

[Razoo]

Oh Magsle, I hear you i hear you. You said you had other illnesses, is one of them Myasthenia ages is? I have that and went through the same anguish as you, I couldnt smile, so I didn't like being around people who told jokes, because I couldn't laugh at them, and if I didn't laugh they would think I was a prude.

That guy sounds like a prick, it made me angry as you were explaining it.

I hope that you get better soon. I will be thinking of you.

Try to forget about that Dick. He's probably a very lonely person when he's not acting.

Take care.❤️🍀

[magSLE in reply to Razoo]

Razoo, It's confused me cos my body is behaving in ways I'm not used to but I just accept that. Ask for your comment about the comedian I agree with you. Hope you've found positive coping strategies so that you can enjoy life as much as possible. That saying about "your illness/disease doesn't define you" just doesn't seem relevant now my conditions are active. No I've never had Myasthenia

[Minimum]

O wow I'm sorry you were treated that way. But thank you so much for your post it has shown me I'm not the only one who gets these overwhelming tiredness, I now have something to go back to the Dr with thank you. xx

[magSLE in reply to Minimum]

Minimum I'm glad we can share our experiences & feelings on this forum. Living with Lupus & other conditions are new to me so I'm still to make of it all. My conditions have been active for 3 yrs now & have temporarily taken over my life with the physical & mental being affected.

[Minimum in reply to magSLE]

So true when I was first told I could of cried, I had felt I was going out of my mind!! Good Luck xx