Lupus, life, and counselling: Well fellow lupies... - LUPUS UK


29,632 members β€’ 26,178 posts

Lupus, life, and counselling

LottieLou96 profile image
β€’27 Replies

Well fellow lupies, 😜

I've had my first appt with a psych today, bar neuropsych πŸ˜†, and have got it done privately. Costly, but if it's something I need then it's priceless to me.

Well, you may ask why now? Why counselling? Well lupus can take your sense of identity and not only that but those who knew you or family that once cared for you can really make your sense of self even worse if they don't understand, or can't emphasise with what youre going through.

This was the case with my own, sadly, it was the straw that broke the camel's back, that they didnt want anything more to do with me, other than to berate or get physical with me. But neither could they leave me be to live peacefully out with their presence. Something that I have been a struggling for over eleven years. Guilt, shame, lack of self worth, the never ending agony of a condition most won't treat etc.

Secondly, it is to seek joy once again. That is something not lost only hidden, as I find it is my spirit, which comes from the Lord. This can be shrowded by being tired down by the problems and the daily pain, fatigue, agony, and senseless lack of help from lupus, and by a myriad of other stressors we have to manage on top.

So first session down, and it's a lot to open the door on, but I do recommend it to fellow lupies that need to make sense, explore their own thoughts and feelings and get to a strong mental standpoint.

The only way is up x bless ya πŸ’–πŸ’–πŸ’–

27 Replies

Hi lottie. I've had councilling 2 lots when my OH died in 09 and some more through respiratory rehab in 15 which helped me come to terms with my you I've had family and friends who couldn't care less.I don't bother with them at all now infact I realised I'm better off without as it reduces stress.having got through Brian's death without these peoples support and coping on a daily basis with a chronic illness I don't need them.councilling made me realise I'm stronger then I think I am and I've proved that .genuine people will always be by your side regardless and those people are the ones who are worth our precious spoons.I hope the sessions help you restore your self worth and confidence because you are even more special and stronger then alot of people live every day with lupus ( unfortunately other illness are available)

Sending you big squishy bear hugs and some sloppy washes from M&M .xxxx

You always bring a smile to my face, and I am indeed grateful for everyone I have that truly accepts me as I am. X πŸ’–

I'm sorry about the circumstances around getting counselling, but I'm glad it helped you realise how strong you are SML. Bc it's obvs to everyone else your tough stuff and as we say in Yorkshire your a 'good egg'.

Slowly I'm seeing there are plenty in this world who see the 🌎 in the way I do. And it's important to realise that we are never alone even if it, at times, it can feel that way. And we can be tormented by the 'what ifs' but my work is really helping, people who want the best for me, it makes such a change as well β€οΈβ€πŸ©Ή

Thanks Lottie is abit like an endless 400 m hurdles ...the hurdles just keep coming and us lupies keep jumping but those who berate will fall at one of their hurdles one day xx

Twenty five years ago I lost a baby and partner in the most traumatic circumstances. Counselling saved my life afterwards so I’m all for it!

Hi Stills...sorry to hear of your tragedies..we share more then just lupus.we are alot stronger then people give us credit for arnt we.Sending you big hugs xxx...I won't send anything from M&M they are wet and dirty fresh off the beach xx

I am so very sorry to hear this. My heart goes out to you. That is a pain that never heals. We couldn’t have children and that continues to hurt despite being sixty. Like you I felt desperate after my hysterectomy and counselling helped me no end. Huge Cwtches and much love xxx

πŸ€—πŸ€—stills πŸ€—πŸ’œπŸŒˆπŸ˜½πŸ˜½xx

I’m so sorry Stills to read about the loss of your baby and partner πŸ’ž

Hey Stills,

You are one courageous individual, I can't imagine anything worse, but I am so thankful your still here.

Big hugs and blessings xxx

My physical health and my mental health are so connected. Treating my mental health has improved my physical wellbeing and quality of life greatly. I hope you find solace in your treatment as well.

Hi Lottie, I am so pleased that you are getting the help you need and deserve. It hurts so deeply when people you love reject and dismiss you through something you have no control over. I do not have family but I have had some friends who I cared for like family that have left me because I was no fun, always sick, not up to doing the things I used to. Like you I have been sad and just resigned to being ridiculed, dismissed and ignored by the medical profession and so called friends. I had counselling last year and it helped me so much. I really was suicidal and the only way I could see to ease the soul destroying sadness was to end my life. I didn’t threaten it I meant it. Then suddenly my eight sessions were over and I was left to it. But something had changed in me. I had a GP fat shame me and I suddenly felt so angry so I told her what I thought, made a complaint and had a written and telephone apology from the practice. Since then I know I am stronger in myself and my tolerance for rudeness, unkindness and injustice is zilch. I complained about the Insurance company and got the pay out which was appropriate. I complained about the service we got when our beautiful Brodie Bear was dying and got an apology and reassurances that no other family would be treated that way and yesterday I stood up to the physio when she tried to bully me into doing squats. If I can do it you can too with the right help. You matter, you deserve better. Keep moving forward lovely, we are all here for you and cheering you on to find the joy in your life again. Huge Cwtches and lots of love xxx

Hey CP 😌

I hope 🀞🀞 that it takes me to new heights, but part of it is being open and accepting everything.

For me, lupus and all the other illnesses, they are indeed a part of me, but they don't define me. They are part of who I've become, and that's not all a bad thing. Bc I see things in a fuller and more complete way. That little joys can have a more moving effect, and that through struggles you can see more clearly what your thankful of.

CP you've done soon we'll lately standing up to everything it's truly amazing, well done for doing that it's inspirational and moving. I hold to the fact that my God's a deliverer and I hold fast to his promise over my life. Thankfully I'm still working, trying to help others get the care they need.

Hopefully, the counselling will help indeed. There's a lot to combat, but again, working slowly with the medical team, they are slowly realizing that I'm not anxious and there's a heap of things to unravel and try to help with. I have many physical injuries from my past that I haven't ever got sorted, that I'm trying in hindsight get some help for, as well as the more recent issues. But having a bit of hope and faith is better than none at all, and I think I can speak to a time when even I have felt that way.

Everyone has their own unique story on here, And each voice deserves to be heard and helped and many speak of an unwavering and strong character that I can only hope one day to possess.

Bless you,


You will get there Lottie. You are a strong woman and resilient. I think we bury a lot just to keep going and there is a time when we have to air our hurts to heal and move forward. Keep us updated lovely xxx

I had years of counselling and afterwards found a lot of things changed. New things opened up and I just found myself walking into them. Life was less stressful. I think I believed in myself more. I seemed to move a way from things that caused stress into places where I could give more, and feel more peace about where I was.

I think you will go places Lottie. Know you strong, talented and clear thinking and have so much in you to give. It is good to take time caring for ourselves..if you find the right counsellor it is a Godsend. πŸ™xx

Cecily you are one amazing strong woman - sending huge hugs to you πŸ€—πŸ€—πŸ€—πŸ’•

Bless you I wish but I am trying xxx


Hi Lottie πŸ€—Big up to you lady!! πŸ™ŒI've been sat in both chairs in a counselling situation..professionally in the counselling chair n post lupus in the chair opposite the counsellor!! We were working on my anger when covid hit n I haven't made contact again..think I may have been discharged but I was seeing a counsellor from MIND which was very helpful n tbh I didn't realise I'd had so much trauma in my life until I actually started to examine my issues.😱Mind body n spirit are inextricably linked n we have to nuture all those aspects of ourselves in order to achieve some kind of balance within out lives. Keep the faith πŸ™

You're talking to quite a lot of ladies of a certain age too (myself included) n I have to say that when a lady reaches that certain age she tends to take less n less crap from other people!! We start to take stock of who is going to be close circle n who is most definitely not!!

You've got us lot to sound off to're not alone n I think that most of us identify with your post.

Onwards n upwards πŸ’œπŸŒˆπŸ˜½πŸ˜½xx

You are so right KK about age...we care less about what people think and we have no desire to impress anymore so we take less crap and speak up more.the things that matter change position on our priority list xx

I never thankfully use to care about anyone's opinion of me, other than that of my close family. That's my kryptonite. But I get where your coming from. Me choosing to stand up for myself, led to worse 'punishment' and problems with police, work, life etc. So in the end, I was pretty tired and worn and stopped fighting for myself. I can't help but love them. But I know it's not right or fair and I'm choosing to protect myself and heal. Hence, the input from medical showing the brain injury, the broken bones, the fractured vertebrae etc. It's just to protect me going forward. And learning that these things aren't okay, however unwell or a dissapointment I may be. Bc I know I have alot to offer and lupus is enough without the other add onsx

I'll get the strength to stand up more πŸ’ͺπŸ’ͺπŸ’ͺ

I'm sorry to hear of your injuries I hope help is still available for thing though you are never and never will be a disappointment .You will gain that strength .hopefully with every little thing you conquer with the help of your councilling you can carry that strength forward and build a momentum πŸ’ͺ ❀ xx

Oh yes definitely 😁,

I still find an overwhelming sense of joy and peace ✌️ at times, through my own belief and knowing personally that their is more out there, Soo much good. πŸ™‚πŸ’– But yeah just want to be stronger to help those that need help x

Hi Lottie Lou, You have endured so much and in spite of it all, you have expressed such inspiration. Seeking help is a very courageous step. Having been there, it opens up layers that sometimes we are not even aware of. 30 some years ago, I sought help because of a paralyzing fear of driving when there was any snow. I realized when the fear started in the summer anticipating winter, that it was out of control. Very quickly, that fear was the tip of the iceberg, no pun intended. I was so fortunate to have a wonderful counselor who kept me grounded and when diagnosed with lupus helped me through that as well. Unfortunately, he died too soon. I still miss his guidance. He was a true blessing in my life. I did try to find someone else, but no one has come close. The connection is so important. I hope you have that connection to guide you through your journey through healing and joy. Having the right someone to listen objectively and validate is so important. I will keep you in my thoughts, wishing you all the best. Be patient and gentle with yourself.

Healing, hopeful hugs.

Big hug pumpkin πŸ€— 😚 xx

Thank you. And a big hug to you as well.

Healing hugs.

I’m so glad your appointment went well Lottie , I’ve never had counselling myself but my eldest son has and it really helped him - big hugs to you πŸ€—πŸ€—πŸ˜˜

So much is around finding the right person. For me they have to 'have been there a bit' (shared what we are going through) - be able to relate to what I'm saying.

The one I saw for years was brilliant. I found Cruse also great - but one through work, booked sessions before handing in notice, and another I tried two years ago were not...

Some of it is around cost too. The person I saw who was brilliant did not charge too much, really ethically minded and well healed too, experienced loads in life themself.

You may also like...