Lupus taking its toll on mental health - advice on speaking to a professional / counsellor

[willowclose]

Hi guys - I’ve just joined up to this amazing community today, and am looking for any advice/help for my girlfriend if anyone has a few mins spare.

She's 26 and was diagnosed with Lupus around 4 years ago (initially misdiagnosed as mixed connective tissue disorder). We’ve been together a few years and I’ve come to learn about how the condition affects her, compromises she needs to make, what good days and bad days look like, flare ups, and the many different types of pain she suffers with (all of this, amazingly, with a smile on her face).

Recently she’s been working long hours in her job for a prolonged period, in a high stress environment, and it seems to be taking its toll. She’s generally having to rest most weekends to get the energy for the week, but she’s now suffering with a fairly constant headache, sometimes forcing her take long breaks in the day – she takes painkillers every now and then, but she’s always been worried about building a dependency so ends up suffering through them most of the time.

More worryingly though, it’s taking its toll on her mental health (obviously not helped at all by having to shield from COVID and make more compromise than her friends and family during this period). She’s told me candidly a few times now how hard it’s all getting, and that she struggles to see how she’ll keep fighting if it remains like this forever. With her being so upbeat and smiley almost all the time, it’s heartwrenching to hear, and I feel so powerless in those situations. I’ve struggled with what to say, or what to do when it gets really bad, beyond being there for her.

Other than obviously trying to manage stress levels at work (which should get better soon hopefully), I’ve gently suggested a few times whether it might help if she’s able to speak to someone professionally, as a way to hopefully help her manage the condition mentally. She’s been somewhat open to it, but has always said that she wants it to be someone specialised and trusted, ideally someone recommended.

So here I am - if any lovely people here are able to recommend any good counsellors / professionals which I can get in touch with (ideally in the South East/London, or in Yorkshire area), that would be a huge help to us, as would any more general advise/experience in speaking to someone professionally. If anyone else has found things which help the treatment/management of constant headaches too, she would love to hear any ideas.

Thank you!

[Willow1414]

Dear willowclose

I’ve gust read your post , what a lovely kind person you are .

I’ve just got up and feeling not well today ,anyway don’t want to talk about myself . Sorry to make this message short . But straight to the point .

I was referred by one ruematology nurse over a year ago , has struggling so much mentally and physically with diagnosis of lupus and all it’s weapons .

I was referred for counselling to Leeds St James Leeds .I’m still seeing my her to this day . She’s genuine and professional .

A gods send . Her name is Rachel sorry don’t think I’m allowed to publish her second name .

Hope the helps.

🦋❤️

[whisperit]

ive sent a PM

[svfarmer]

Firstly I’ve got to say you are doing a truly amazing job at supporting your girlfriend - she is very lucky to have you of which she knows I’m sure.

I my self have lupus and have been shielding and getting really fed up with it now as is everybody else so I really do understand - is there maybe a way she could reduce her hours at work possibly? My eldest son lives in Covent Garden , London, he has suffered very serious mental health issues in the past - he had CBT as he had OCD but now he is like a new man - he keeps his mental health in check with meditation 🧘‍♀️ but he has lots of contacts in London if your interested in talking to a professional x

[Tinkabell555]

Hi willowclose, great place to post your message and get some support! you sound like you are doing a wonderful job supporting your girlfriend and I echo a lot of her story, I’m 31 and was diagnosed with lupus last November, I also have a stressful job which I love but can take over and leave me feeling exhausted with nothing to do but rest on a weekend! I still am trying to learn and get the balance right! Equally I struggled with adjusting to the diagnosis and still do, wondering what my life will be like in the future etc and I had a few counselling sessions which helped and have learnt some other techniques along the way, I’d be happy to have a chat with your partner and I could suggest some serviced they may be helpful? Although not specific people, but I find that’s an individual choice who you connect with etc everyone’s different in that way! Sending lots of love and care to your partner! Xx

[harmony2]

Hi willow close,

I’m really impressed with your summary of the situation and your commitment to helping your partner. I want to reply but don’t have much energy. Therefore, ahead of time I apologise if sounds blunt. My intention is to be to the point because I can be wordy! And yet there is a lot to learn in this journey of chronic illness and it is not always easy to access the lessons others have learned ahead of us.

Please consider processing some of these thoughts with your girlfriend because they’re obviously influenced by my experiences over the years and those of others I know but I acknowledge we are all unique. At a minimum, I hope that discussion of my suggestions create some good conversations between the two of you.

Sadly, though I am in one of the locations that you mentioned, I cannot suggest a counsellor as I, too, have struggled to find someone who “gets“ chronic illness, a clinician who is not working from books/theory but from real life, whether their own or someone they love. I find personal friends and forums like this more helpful at present, though I’m sure there are excellent counsellors out there who really do get it and I do support use of counselling highly. I am mainly trying to say that I somewhat agree with your girlfriend’s perspective that it does matter if the person has a deeper understanding versus can parrot back to you what they think they hear you saying but often get wrong. (This is my experience based on 20 years of chronic illness.) I feel that we have such limited mental, physical and emotional energy that to “spend“ it trying to get someone to grasp what is very significant and complex is not a reasonable or wise way to spend our valuable, limited resources.

Important note: expenditure of energy whether mental, physical or emotional is fairly equivalent for many of us. For example, the following

all use precious energy: to attend an appointment, socialise, read, travel, work, or even play. Re counselling, to do a virtual appointment might be valuable strategy to save the exhaustion from the effort expended to travel. Every expenditure counts.

I have a wonderfully supportive husband, like you’re trying to be to your partner. He feels that he can’t fix it. Because he loves me, this saddens, hurts and sometimes frustrates him. He went through a few years of being very angry about this. (This was not directed at me but just in general and even towards God.) Important: Know that you cannot fix it. (In the case you might have the urge to “fix”, please be aware that to spend your precious energy towards wanting to “fix it” can take away from your present ability to be tuned in and supportive to your loved partner. This will it be something you will need to accept. It is a long process of doing so. There is grieving involved. HOWEVER, your support is a TREMENDOUS gift. It will never stop being so and please don’t ever devalue it yourself.

Re work schedule:

If your partner has to rest/crash all weekend that may mean she may not be doing something very important called pacing (“ Pacing and chronic illness”). You can search this on the web but a really simple analogy is the “spoon theory“. It’s a good visual aid and communicates well to a lot of people. Please check it out.

Pacing is CRITICAL to avoid being on a rollercoaster of working hard when we feel slightly better or have responsibilities which are too great for our our reduced capacity. Then deep lows ensue (physical, mental, emotional and/or spiritual lows). To continue on the rollercoaster is destructive. I know this from experience and I know this from hearing it from both a mature rheumatologist and a seasoned rheumatology specialist nurse.

NB: I can mark at least two points in my life where a large expenditure of energy resulted in a permanent reduction of the capacity I had prior to those experiences.

In my experience, to accept my current, reduced capacities is extremely and excruciatingly hard. It is another source of grief, ongoing grief—since it keeps changing. Additional losses continue when capacities shrink, sometimes sudden reductions or sometimes ever so gradual ones. As a result the grieving can be continuous and drawn out. There can be plateaus of more settled acceptance but sometimes we can feel thrust back into the grief process where we thought we’d come to some level of being okay with our current functioning.

I am still working on not comparing myself to others or to my previous abilities. This may be lifelong as it just bubbles up on hard days during flares in symptoms and fatigue.

A big thank you for being a support to your friend and lover.

Consider continuing to get support for yourself proactively. Build friendships when you meet another person or couple who get it. Keep coming back here! Blessings of strength for your journey!

Very sincerely, Harmony2

[Treetop33]

I've really benefitted from having therapy, but generally it is something people have to want to do themselves when they are ready. If she thinks it would be useful, I've found integrative therapists the most open minded. Book an initial session and if she gets any bad feelings from the person (like they aren't understanding or don't seem empathetic) she doesn't have to go back.

I've found the book 'Despite Lupus' by Sara Gorman really useful (though a little self-congratulatory in places, as well she might because things worked out for her). Everybody is different and they find their own adjustments, but it does take a process of grieving for the person you were.

By way of passing, I am about to start training in life coaching and as a Lupie I plan to partly specialise in managing chronic illness, because I just saw there was a total lack of it and much psychotherapy doesn't necessarily have the best attitude to illness and disability.

As someone who was traditionally rather driven and totally in denial about my diagnosis, and have had to change my habits and identity as a result, I can tell you that a reasonably healthy life and personal fulfillment is possible despite the diagnosis. It is a bit of a journey though.

Take care, both of you xx

[willowclose]

Thank you all so much for your responses! I'm sorry for the slow reply, but its all really really appreciated - was not expecting the thorough and detailed advice and guidance that you've all sent, so thanks again! This whole community is new to us, but it seems like such a powerful support group, so will make sure I encourage her to use it more and more