Being real Frank, mental disorders and lupus

Being real Frank, mental disorders and lupus

Hello everyone,

I need some help. How many of us have mental disorders? Besides our obvious depression and anxiety we get. I mean actual diagnosed disorders?

I have been diagnosed with OCD, ADHD, Panic Attack Disorder, Agoraphobia and Cyclothymia. Terrible mixed bag let me tell ya!

My mother who also has lupus, has never been diagnosed, however strongly, very strongly exhibits many traits and symptoms of borderline personality disorder.

I understand this is a touchy and sensitive subject, to our egos. But I am very curious, the actual amount of lupus sufferers who also suffer with mental disorders.

If so, are they lupus related? My walk in Dr constantly reminds me that lupus affects the brain and it's "issues" as he delicately refers to mental disorders.

Me, personally, I received these diagnosis between the age of 34 and 36. I was late into my 36th year when lupus was confirmed.

Currently I am battling my disorders solo. No medication, no doctor and a healing amount of self talk and positive surroundings.

My cyclothymia, which is a low grade constant depression mixed with low grade periods of mania, is taking over my current life. I am beginning to see my patterns. And I am wondering if the stress from these, sometimes 10 mood swings a day, is feeding into the lupus?

I chose not to take medication because they make me feel angry, volatile. I am an aggressive person on my own and with the medication, I become Godzilla. So I opt for the mind over matter way of dealing with my disorders.

I am at a crossroads in my life and I have about 4 weeks to decide. Thus, my opening question, and your answers and how you have learned to cope with the disorders (if you have them), would help provide me insight on making a major life change...again, moving 3500kms across the country.

Please do not be shy. Be open and honest.

Thank you, sincerely

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28 Replies

  • Great post Lara...good questions. I'm looking forward to following this discussion. I feel as if I can't contribute much, because my versions of mental illness have all been "functional" enough to avoid formal diagnoses. I've only had to resort to health system help once when a GP prescribed daily antidepressants for 3-4 months which helped a lot (during my divorce - way back in my late 20s after a 7 year relationship, for which I moved to the uk leaving all my family behind in the am relating to your potential big move).

    But several times over the decades I have benefitted Hugely from vvvv constructive private formal counselling. Depression & alcoholism run in my maternal & paternal family, although, again, not formally diagnosed (my father spent the last 15 years of his life attending AA meetings). I, on the other hand, was a functional (just) anorexic as a v young woman, way before this condition was commonly recognised. Throughout my life I have lived 1 day at a time managing depression, suicidal thoughts & eating disorder....feeling v lucky to avoid health system treatment

    My version of immune dysfunction + connective tissue disorder is infant onset (vascular lupus ehlers & ehlers danios + a typically big collection of secondaries including Sjogrens & primary immunodeficiency which developed many years before my lupus was rediagnosed 5 + years ago. Since then, systemic daily combined therapy treatment is helping me feel less pain & more resilience + stamina than I have since my early 20s...for sure this is further damping down my mental disorders).

    I have no doubt that the strain of living most of my adult life without effective daily treatment for my my physical systemic health probs has definitely aggravated my functional mental illnesses. But a lifetime of studying the science etc re my mental illnesses (via any legit source available: print, to, radio before the internet) + phases of intensive formal therapy/counselling has helped me enormously to minimise the impact my functional mental illnesses have on my life.

    I am now 63. My modus operandi has always been to avoid inflicting my probs on those nearest & dearest to me...this has been very isolating, which hasn't helped me at all...and this is one of the reasons our wonderful forum & discussions like yours mean a great deal to me

    thanks again for posting

    Wishing you every best wish

    🍀🍀🍀🍀 coco

  • Wow, that was very well said Coco.

    I sure do hope others will chime in. I am interested in seeing if this a common thing with lupus.

    Like you, I come by depression and alcoholism in the genes too. I'm not one to drink often but let me tell you that bottle of gin in my cupboard sure has been tasty lately....yikes! Red flag.

    That was actually one of the reasons I made this post. I realized that I was trying to self medicate using the gin to deal with my whirlwind of a brain and moods.

    Please people. Don't be shy and speak up. I know depression is a biggie for us lupus recipients, anxiety comes next. Anything else?

  • Gosh yes: this degree of self awareness...self scrutiny...& self discipline...self restraint....whatever you call all this: VITAL!

    Am hoping others will join in

  • I started a similar discussion and it seemed no one wanted to share.

  • Do you suffer from any mental disorders Monkey14?

  • Well yes. I shared a whole bunch of stuff. And I actually didn't want to share here after nobody seemed to validate it as they have done here and on another thread started in the last day or so.

    I find that weird and it makes feel even more isolated than I already do. I even apologized for over sharing within my own thread.

    I'm a little pissed off honestly. Not to take away from this discussion bc it's what I was looking for. To help understand what the experience of neuropsych SLE was. But I guess what I shared was too off putting.

  • Hi Monkey 14

    So sorry you had that experience. Hope that you continue to get support from the lovely people on this forum.


  • Hello sorry I missed your post on this because my sister was staying from the states so I was distracted & missed lots here sadly...I just went back to find your post:

    although only a few joined in, I'm glad you got a discussion going on this sensitive subject and I suspect many may have benefitted from reading through your discussion - and will in the future.

    I often remind myself that lots of folk are here just to read and it's so important they feel no pressure to tap in stuff if they aren't feeling up to it

    Am so glad we're here discussing this openly now with Lara & babs

    Take care

    Xo coco

  • Monkey,

    I apologize if I or my post hasffendedd you. It was not intended in the least!

    I didn't realize you had made a post regarding the same topic only days before.

    I do not check this forum everyday. I don't want to set anyone off.

  • We post, whine, complain, ask, relate and constantly search for a commraderie in our daily lives, with others here on this forum; whether it is aches, pains, fog, low motivation, fevers, tests, testings and results, also some of our happy moments, like weddings, holidays, positive dr appointments and the like.

    We share almost everything on here. From bodily functions or lack of to bodily fluids and lack of.

    Mental disorders are no different than physical disorders. We hear that they can arise as a product from lupus. Is it possible that I am the only one who suffers from it? Nah, I don't believe that. But I do believe that it affects my lupus. Or is it the other way around?

    I can't seem to figure this one out. And I bet once I do, I, and probably many others, might be able to handle daily life stressors, triggers and furthermore flare ups with a better sense of awareness and treatment plan.

    I have learned a lot about myself ancoping mechanisms surrounding my disorders. I have learned little surrounding my flares. it is a well known fact that stress very well may be the number one contributor to flare ups.

    If we can openly and collectively talk about these hush hush disorders, with an effort to help combat our daily stress and the effects it has on our lupus driven lives, (or the other way around?), We could be on the path to remission? I never had one yet...would love to experience it.

  • Hi Lara

    I agree, it is not easy to talk about mental illness. The stigma is unbelievable. I was diagnosed with this illness about 18 months ago (probably many years before diagnosis). I have been depressed and anxious throughout my adult years. Problems with alcohol and suicide. I am now, hopefully, in remission from my depression and alcohol (thank God). It is still very difficult living day to day, agoraphobia, social withdrawal etc etc.

    I've always been a 100% perfect or nothing person. I get really irritated if people do not do what I expect. It drives me mad cos I know it's not right.

    Hope this helps.


  • Am so glad you're here babs. I feel braver about my version of this stuff just knowing you, Lara & monkey are here and ready to discuss these things

    XO coco

  • Hi Babs,

    Thank you for sharing your story :)

    I too, like you, have high expectations and always always always aim for perfection. I am constantly reminding myself, do not impose onto others what you demand from yourself. It is unfair and has proven to be detrimental to personal and familial relationships.

    The major depressions, I have overcome. I've attempted suicide once, shortly after my daughter was born, I was told I had post-partum blues. Looking back in time, today, I have to disagree, I suffered from major depression. However, it was a real life lesson for me.

    Never give up, there is always a light at the end of every tunnel.

    Gambling and driving are my vices. I am usually good at refraining from drinking because I know alcoholism runs strong in my genes. But after wanting to take my glass of gin and tonic to rid of the stress and then another then another, was a red flag for me.

    I need help, period.

    I have reached out and am in the process of getting help, but I also cannot keep wondering, is the lupus triggering this or is this triggering the flares?

    I appreciate your reply :)

  • Hi babssara

    I can relate to every word you have written. I have a lung and coronary disease, mobility problems and the thought of going out alone I just go into a panic, particularly as I use oxygen and a walker. I go out only for hospital appointments which my friend takes me, otherwise I wouldn't go. I cannot motivate into doing anything however hard I try. It's a lonely life, unfortunately my making.

  • Gran74,

    Words of encouragement. ***** the world and get out for a 10 minute walk in your area.

    Much easier than said, I know! People's judgment, or your self proposed judgement, is such a hard notion to overcome.

    The way I got myself to leave my house (I wouldn't even pay my rent, I was 3 months behind because I was afraid of people and was nearly evicted), I challenged myself to not care anymore about what other think or may feel. I hit a point where I refuses to let my fears rule my life.

    To this day, I still hold that firm in my mind. However, with that said, being a hypocrite I am, I still will not leave my house unless my bald spots are covered up with a hat. Even so, I get brave moments where I will walk out without my hat on and say, sheesh, was that so hard? Of course the voice of reasoning says...yes!!!! But I did it none the less :)

  • Hi Gran 74

    I totally relate. Constant chest infections, dreading the winter months. I too only go to hospital appts but have to get taxi door to door. Motivation is a real killer when this illness gets a grip.

    Take care


  • I completely agree that being open about our mental health problems can be really helpful. But I guess that not everyone will feel comfortable doing that on the internet...

    I've had mild/moderate depression in the past, but - so far! - the worst psychological impact has been the loss of confidence in my own body's ability to fix itself. It's hard to describe, but before this diagnosis, I felt like if I got ill with anything - physical or mental - my body would somehow figure out a way of getting back to normal, eventually.

    But this auto-immune disorder means that my body no longer knows what 'normal' is any more.

    The meds I have to take add to that feeling because they mess with so many fundamental systems, in ways I don't really understand (and I don't think anyone does!). No wonder we get anxious!

  • Thank you whisperit,

    What you said is very true, about opening up in an open forum and about lack of self confidence.

    Maybe this could be an underlying cause as to why lupus is not as well known in the awareness area of the world, like MS is?

    I'm not sure about in the UK but I know here in Canada, everyone knows about MS and very few about lupus, regardless of that lupus is more common.

    I am really hoping the more this subject is discussed, the more we can learn and benefit from not just the crippling physical aspect of lupus, but also the mental aspect.

  • Yes! Lupus is such a poorly understood condition. And there are other stigmatising aspects to it. Just for starters:

    - most sufferers/survivors are female (and aren't women prone to being a bit hysterical and weepy??!!!!! ;) )

    - lots of the main symptoms are subjective - whenever I try to describe the the profound fatigue that I have, and even though it is so bad I literally cannot walk to the end of the street, I even find myself disbelieving *myself*!

    - the symptoms are as varied as the people who have it, so it must really frustrate the medics ("Oh no - he's back again complaining about yet another NEW thing - isn't he ever going to be satisfied?!!") So you get to be the classic "heartsink patient"

    The struggle continues!

  • Hi Lara,

    Thank you for your encouragement.

    My bald patches still are a problem, but not as much as when I first was diagnosed. A colleague said it sounds like "leprosy" !! I was stronger then and got on with my life, now I have just got deeper and deeper in this depression. I am on medication which has not helped.

    Take care and once again thank you xx

  • Gran,

    Whilst it is not the best snapshot, I took a picture of some of the baldness I have. It is terrifying to let others see it.

    I have shown it here, to help encourage you in knowing that you are not alone! And yes, there are very seldom times when I go out without a hat on! Yikes!

    Words and picture for encouragement. I will do whatever I can to help other become empowered :)


  • Lars,

    I was astounded with the amount of hair you have lost, bless you. My bald patches are on the top of the scalp and down both sides. If I go out I wear one of the fashion head bands. am able to push the remaining hair through the band to keep it in place. !! I look like a 'scrubber'. You can get some great hats/scarves from through the cancer unit. Take care and hope we can keep in touch. xx

  • Lots of hugs of comfort and assuring sent you!


  • I can't really say my bipolar is related to lupus, as I've been mentally interesting since the age of nine, and my lupus diagnosis was nearly a year ago. I was sectioned 8 years ago, and had an unrecognised lupus flare. It's clear to me now that that's what it was. The physical illness was ignored and my section extended because I was "imagining" the butterfly rash, hives from the sun and aches and pains. They decided to lift the section when an A&E doc sent a stiff note asking whether the psychs were intending to kill me. The flare went a week or so after I got home.

    Since then, my CPN has been a good advocate by pushing things along, saying that my bipolar is stable and any depression is a result of lack of attention to my poor physical health. She feels we need more specialists who look at the whole body, including mood and mental health issues. Until then, she knows her patients and is able to advocate when physical illness is the problem. Many who are mentally interesting are very unlikely to visit doctors - you've either had a bellyful already or expect to be told it's in your mind.

    This is not quite to the point, but is my experience. My rheumy just notes I have bipolar, but sees it as something quite separate to my physical state. That's fine by me, and in my case.

  • I'm a strong believer that meditation does change the way you behave, growing up with my mum having so many disorders seeing what do much medication and depression can do to someone. But also with myself sometimes I just give off for no reason or I feel low, and I always been happy and loving life don't care what people think, but I do think the medication does change me some days the way I behave and deal with issues but also sometimes the stress of having lupus and all the appointments starting to annoy you. But being around people that understand helps a lot, my poor boyfriend gets most of the mood swings. Everyone gets low moods everyone gets a sign of depression, everyone gets angry it's what you can do for you're self and no one else if you don't like something in you're life change it! I was with an ex put me through so much stress drinking and going on about my rashes making me feel worthless end of the day I did and ended up in hospital near over dose. After that it just got worse and worse me thinking it was me that was screwed up. One night I just decided I need to change my life or I'm going to be stuck in this abusive relationship and left went back home dropped out of uni and hibernated till i was ready to sort my life out, my lupus and rashes joints are so much more undercontrol now then with my ex. There is a sliver lining I'm with an amazing person. Know it's a long post but depression and everything else there's always a reason and sometimes it's not always the lupus. The happier you are with you're life and you're self the better your lupus is and your own mental health!

  • Jess,

    How did you find your happy place? You mentioned right off the hop, meditation. I have tried numerous times over the years but have never succeeded with it. My brain never slows down long enough to focus on one thought.

    My sister meditates very often. I use to be heavily into alternative therapies; reiki, reflexology, herbs and homeopathic medicines, Crystal therapy. I have a very strong sense of spiritualism, or perhaps I should say had. I have e fallen away from it as life took over my daily existence.

    I'm finding the older I get (and I am only 39) the more dissatisfied I feel with others in my life and I find that I constantly feel confined, even though I am not.

    Prior to moving back to Ontario this early spring, I had what every woman wishes for (even in their quietest wishes to themselves). I had a man who doted on me, did not want me to work and only wanted me to focus on my health. He bought me anything I wanted (but I only asked for one thing...I got purse) but he spoiled me rotten. I hated him being so lavishly with me. I was not used to it. I've always had low self esteem (until 3 years earlier, then I found my back bone and my value). So the majority of the people in my life were controlling, dark, depressive and oppressive. Only months after moving in with him, he buys me a Camaro! I didn't want it. I felt as though he was trying to buy my love. How wrong I was! He truly, sincerely and honestly loves me entirely. Hair loss, fits of anger and out bursts, days of staying in bed. He would massage me nightly, even after a 14 hour work day. But he drove me nuts often, as he suffers from ASD.

    Then I left him. My daughter (18 then) moved to Ontario and rented the basement of my old place where my ex (the one I just kicked to the curb last night). Less than 6 months after her move, I follow.

    I left the life that many women wants, wanted or dream be with my family again. Except the man I moved in with is a disrespectful are. But he had what matters most to me, my daughter and my step children.

    Now, the first guy, still wishes and asks me to move back, constantly. And I am.

    Question to this story, I am jumping from fire to fire. I am petrified to live alone. I can't live alone, my mental illness doesn't allow me to. Like the lupus, I will have my good days then my bad weeks. It disables me from being able to live a 'normal' adult life. I simply cannot wake up. I can sleep 18 hours if my 12 or more alarms are not set. I need to rely on someone else to wake me. Been like that since I was a teenager. My daughter, she too struggles with depression and anxiety and I would never impose or rely on her. I could never be her burden.

    I never seem happy where my lot in life is. You suffer with bi polar, how did you find your happiness and contentment throughout your ups and downs?

  • Thank you for sharing your story.

    Since my last post and now....I did something. I ended my relationship with my partner.

    I leave for Edmonton tomorrow morn. While we were on the rocks (we were together 4.5 yrs ago for 5 yrs), but he completely understood what I am going through, emotional, physically, psychologically, supported me, in fact pushed me to get into the lupus clinic next month. Anyway, I stated just today, that while in Edmonton I was going to go back to my psychiatrist to get some help. To help muddle through what is real and what is not so real as far as my emotions go.

    Stress. Stress. Stress.

    Of course, I am on antibiotics for yet another friggin infection. Just given them on Tuesday. Which is what triggered this post.

    I was fine for the whole summer, not one symptom of a cold or sinusitis...until his behaviours started happening. That is what got my mind thinking...are these two related? Does stress trigger mental illness episodes? Yes. Does stress trigger lupus flares? Yes. Are they connected or does one trigger the other?

    Tonight, I ended the relationship, in place of waiting until i get back (he use to abusive me mentally). I went for my usual drive. Ended up at the casino, sat there for an hour, played for 1/2 hour then said to myself, no! Go home. You should not run from your problems. Sadly enough, as soon as I get home, I finished my bottle of gin (only 2 drinks left), and again beat myself up.

    All the while, him screaming at me and me to him in retort, him telling me both my daughter and I have 30 days to get out. Ugh! Really? After I just gave you $800 to pay your debt that was before me?

    I cried. Tears just don't happen with me. They are almost impossible. I couldn't believe it when I felt them.

    Did my infection come first? Or did my rollar coaster induce it? Or did they simply happen simultaneously?

    Lupus sucks. Mental illness sucks. Here goes yet another sleepless night.

    Apologies for my rant and gratitude for the listening ears. day at a day at a time... :)

  • Lara

    What a bum night. I really think the insidiousness of this illness encourages us to do things we know are bad for us. But, don't beat yourself up. We know we go through these episodes, but come out the other ok.

    Rest and take care


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