I posted this blog on my own site today. I took me a while to frame what I wanted to say, but I think I finally got it right. I'd like to share my thoughts with this community. If the links don't show up, just paste the names of the articles and search that way (that is, if you want to check out these sources).
Lupus and Stress
I think everybody has heard the expression, "Stress kills". Most of us accept the truth of this because it seems to make sense and we can probably think of someone we know who has been under stress and then suffered an illness or even death. It turns out that science supports our gut instinct on this issue: research suggests that stress can, indeed, make us sick and increase our chances of dying prematurely.
A 2010 paper published in "Experimental Biology and Medicine" ("Introduction: The co-morbidity of stress and disease: effects of chronic stress on metabolism, cardiovascular disease and behavior") outlines the relationship between chronic stress and disease development. The authors of this paper do not cite one study to support their thesis; what they do is draw upon a growing body of evidence which indicates, they say, that stress is a "key contributor" to heart disease and gastrointestinal disease. They also point out the relationship (which is not hard to understand) between stress and the development of psychological disorders.
When it comes to lupus, the role of stress becomes even more pronounced. Anyone faced with a chronic, incurable disease obviously has to learn to deal with this reality. In the case of lupus, it seems the tools for dealing with stress are compromised by the disease process itself. Even in patients who do not have neuropsychiatric lupus (and about 40% of us do express this symptom), problem-solving skills are often diminished. There is convincing research which suggests this.
An article published by the University of Colorado Health Sciences Center ("Major Life Stress, Coping Styles, and Social Support in Relation to Psychological Distress in Patients with Systemic Lupus Erythematosus") comes to the conclusion that SLE patients tend to have "poorer coping skills compared to...RA and control subjects". This article examines the way in which different people approach difficult issues. People with lupus, as a group, more often use "disengagement" when faced with a problem. "Disengagement" means, not solving a problem but avoiding it.
Another article ("Stress as a Predictor of Cognitive Functioning in Lupus") published by the University of Granada in 2006, has implications for the harm the lack of engagement can lead to. The Granada paper details the physical and mental price that stress exacts from lupus patients: "Hypothetically", the authors state, "stress maintained in a chronic way may not only produce a worsening of the lupus symptomatology, but it can also produce negative cognitive consequences...". So "disengaging", or avoiding a problem, is likely not in our best interest--because more stress means more disease, and an unsolved problem will bring us more stress.
Many years ago, when lupus was very active in my life and I was not handling it well, my doctor insisted I consult a mental health professional. It was the guidance of this professional, an objective third party, which helped me to find my way to better health. She saw that my disease was not being controlled adequately and she found a rheumatologist who could address that. She learned, along with me, to identify the signs of an impending flare--so I'd be able to treat proactively, before things got out of control. And whenever a problem popped up in my life, I discussed it with her and she gently led me through my various options.
Some people think it's embarrassing to admit they've dealt with mental health issues. Some people think it's embarrassing to ask for that kind of help at all. So I'm open about my personal experience: I don't believe embarrassment should stand in the way of good health.
Before lupus came into my life I was a teacher, a mother, a wife. I was as busy as anyone could be and believed I was on an upward career trajectory. Lupus put a stop to everything, and maybe that would have been the end of my story if I hadn't received guidance.
Today I'm doing what I want, once again. Within the context of my disease, I lead a full life (even though it's true I can't go out in the sun, work a regular job, eat a full diet and stay off prednisone for very long). I'm absolutely certain that, on my own, I would not have had the coping skills to forge the path I am now on. What I wish for everyone who has lupus (and other diseases, as well) is that they seek help, as I did, and they find a way to live as full a life as their physical circumstances allow.
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lupuswriter
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Thanks for your words of wisdom. I am coming to terms with the way lupus has taken away my quick thinking and ability to problem solve and make decisions. I used to be sharp and bright and am now dull and slow. I am learning ti live within my mental and physical limitations. Glad im not alone in this.
I really appreciate the comment. I believe, if lupus is under control, you'll be able to get a handle on your cognitive issues. I'm sorry you've been challenged in this way and I hope lupus beats a speedy retreat from your life,
This is so interesting. I totally agree that the lupus has to be controlled first, avoidance of stress is important as is diet and life style changes. Having been on methotrexate for a few weeks already I am thinking a little clearer. I think it takes time to work out when a flare is about to happen and the signs for this. I totally agree that stress exacerbates this condition. So well written.....the only thing I still have to get my head around is can you resume a career or this is a bad move (still on the fence with this one). Thought provoking indeed. Thanks
wow! its made clear now why i avoid making decisions and my thought processing isnt always clear black and white so to speak. i agree stress is a big part of my life as work is a constant worry as i HAVE to get through each shift in order to keep a roof over our heads etc.
i do have depression but arnt taking meds for it.
thankyou though,ive copied it and printed it to read and absorb at my pace.
my life experience fits with your comments in many ways. looking back 60 years i now realise that physical & emotional stress & strain have been a feature of my life since i was conceived (fighting the effects of DES in utero for 9 months (the drug has turned out to actually be effective as a morning after pill). some consultants think it probable DES is responsible for my SLE. my family has both depressive and manic mental health issues, as well as autoimmune conditions. i coped with all this via separate nhs clinics until 2010 without knowing i had been diagnosed with lupus in infancy and as a teen. i did manage an extensive study, an eventful adventurous life, one failed marriage followed by a much more long-lasting one (still at it now 30+ yrs on) and a high pressure career, BUT by the late '90s i was so emotionally disturbed and physically frail that i felt in danger of crashing completely, so i began psychosynthesis therapy, which i have continued until now off & on as i felt necessary. i was lucky to have a WONDERFUL therapist, who empowered me, rather than acting as a crutch. and since 2010 i have been working with a good team of consultants who at least are taking the edge of my SLE symptoms, and making it easier for me to manage the progressive effects i am stuck with.
posts like yours are a welcome affirmation of what 60 years have taught me. it's a wonderful thing to find such important matters expressed so clearly & concisely and with such heart
What an informative post. Thank you. I am so worried about the future at the moment. I am in my final year of a teaching degree and although I am trying to remain positive and telling myself I can and will be able to teach full-time when I qualify, I don't know if this is possible. I worry the stress will have a major impact on my health. I am teaching one lesson this week and it took me all day yesterday just to write the plan and make the powerpoint to go with it. This was despite knowing already what I was going to teach and the activities involved. It was like the stress of needing the plan done made it even harder to just get it done. It was like a mental block and I just could not remain focused on it! I take it you do not teach full-time anymore? Am I being too ambitious by expecting myself to be able to do it? I don't even know if a school would take me on, given my current health issues. Take care xxx
So sorry about the delay in responding; I had some family obligations this weekend and wanted to take the time to respond properly to your very serious concerns. As you know, I am someone who has lupus, just as you are, and so my comments are merely meant to be helpful. However, I did some research this morning and came up with these thoughts:
First, protect your life. It seems you have a diagnosis. That's a good start, because diagnosis means you can get effective treatment. I think of Tim Raines, a major league baseball player in the U.S. who battled lupus successfully. Raines was lucky in a way, because he had fame and financial resources on his side. He was also determined to beat his illness, whatever it took. When he became very publicly and seriously ill with lupus nephritis, he received a quick (for lupus) diagnosis and underwent aggressive treatment. He returned, eventually, to major league baseball as a player and later as a coach. What I take from this story is that with lupus it's really important to get the disease under control.
If stress is contributing to your illness (and studies suggest this can be happening), do what you can to reduce the stress. This doesn't necessarily mean giving up a career you have trained for. It may mean modifying the pace at which you enter that career and changing the terms under which you pursue it.
The good news is that there are proven techniques for managing stress. One of these, cognitive behavioral therapy (CBT) has been shown to be effective specifically in improving the quality of life for SLE patients. A 2004 article published in Athritis Care and Research (American College of Rheumatology publication: onlinelibrary.wiley.com/doi... describes a study in which CBT showed at least short-term improvements in "pain, psychological function, and physical function" and long-term improvements in "psychological functioning".
I surfed the web looking for confirmation of these results and that confirmation came in from various places in the world, including Iran and China. The NHS ( I live in the US so have limited understanding of how your health system works) is on board with the CBT approach. An article put out by the NHS (Cognitive Behavioral Therapy--When it is used : nhs.uk/Conditions/Cognitive..., suggests that a patient talk to the GP if there is a chance CBT may be helpful in treating a medical condition (arthritis and irritable bowel syndrome are given as examples).
CBT is a short-term, practical tool that can be used to alleviate stress and possibly help you get past immediate challenges in your life. NAMI, a mental health advocacy organization in the U. S., explains: "People who seek CBT can expect their therapist to be problem-focused". The process is described more thoroughly in the NAMI article: Cognitive Behavioral Therapy (CBT) (nami.org/Template.cfm?Secti...
As for whether or not you may be refused employment because of lupus: there are laws in the UK which forbid discrimination on the basis of illness. These laws are not absolute and you still have to prove that you can do a job in order to get a job, but the existence of illness by itself is not supposed to be used against you. A July 2012 article in The Guardian (careers.guardian.co.uk/care... states: "The 2010 Equality Act helps protect job applicants against discrimination, by disallowing questions about a candidate's health or sickness record before offering a job". In other words, nobody has a right to ask about your illness and you are not obliged to tell them.
The Guardian article explains a few exceptions to this rule, though basically if your illness does not prevent you from doing a job, it seems the illness should not be considered in the application process. I have to repeat here that I live in the U.S., so have limited familiarity with the way in which laws against discrimination are applied in the U.K..
One thing I do believe though, is that you need to get help right away in sorting out the issues in your life. It sounds like you have the awareness and intelligence to participate successfully in CBT. You, of course, are the only one who can decide if this is right for you.
I'm wishing you all the best and please know I will be thinking about you.
Sincerely, LW
Two relevant articles I came across this morning in my Internet search:
Effects of psychological interventions for patients with systemic lupus erythematosus: a systematic review and meta-analysis lup.sagepub.com/content/21/...
my experience of trying to get CBT (or any psychotherpay) through the NHS was a 2 week wait for the telephone assessment and then 12 weeks for the actual therapy, which again woul've been over the phone. I'd changed GP's by then as we'd had to move because we were witnesses to a crime, so I never did get any therapy.
It's a bit like the NHS webpage says "If you have any signs or symptpms of anaemia, see your GP" . My experience of seeing GPs recently and trying to get a diagnosis or even any bloods done is that it's been a waste of my energy and stresses me so it's completely counter productive. I can't even go and see a Consultant Rheumatologist or Haematologist privately without a referral from my GP.
Well, common sense is NOT so common. Unfortunately, lupus, ESP. systemmic , is do completely misunderstood. Because , on the one hand, people (who do not really k ow..even most doctors!) see you exercising and fine and then flat in the floor depressed and totally wrecked. It's hideous...ESP when isolated if that's the case.
Well, it seems that no matter what the topic, ignorance is a great enemy. Lack of empathy also. Don't know why such misunderstanding persists about lupus when it is not truly a rare disease. I think what you say explains some of it. Until we are laid flat by an outright flare, our symptoms are so varied and hard to diagnose that they are dismissed. The key to changing all of this is awareness--public needs to be educated. Doctors have no excuse; research is abundant that shows high toll on quality of life for those who have SLE. I think for some doctors it's easier to dismiss than to deal with a problem for which they have no clear solution. So sorry for your difficulty.
My name is Monica sigler ( Davidson) I am in crisis here , at a nyc family shelter and am in need of legal assistance and getting sicker due to lack of knowledge of this systemic lupus exacerbated by emotional stress and severe ptsd triggered by such insane slander and wrong that something has to be done. I never addressed the issue and now it's so gang-up witch hunt crazy that I am in south pain I cannot do what I physiologically need to do , not exercise, sing, laugh, OCD re: everything. I am with my husband and isolated as I am a designer of jewelry and clothes and everything by hand and I live what I do . My husband Is a painter and we are both musicians, as well. We are at a family shelter in nyc about to move, but I am unable to take care of so much trauma and stress and I am getting so ill from slander that my 7 year marriage, career, etc and isolation because I work from our room , is so damaged and this is so wrong that I see why I must be "removed".
This is no joke. It's straight out if a David Lynch film.
Fantastic post. So interesting as I've had back spasms for 2 days because I tried to do a full morning of stressful work complete with phone calls about money and business. I've been known among my friends for my sharpness and wit. Now I'm blunted by Lupus. Felt myself getting breathless as I tried to think through the work problems on the spot, a younger colleague waiting for my decision at the other end, arguing about details -- oh goodness. Later that day I was in agony even on painkillers and when I was called to make a decision between two different types of paint I started stuttering with indecision, my mind a blank, the pressure to decide making me feel like blacking out, and I don't even stutter! I stayed in pyjamas all morning today and feel much better just moseying between the odd bit of work and adjusting the dial on my new Tens machine. Ooh, the glamour of it all ; )
Oh my. Reading all of these posts and thinking "this is me" . I used to take charge of a busy regional intensive care unit and run around doing 5 different things at once whilst thinking of 5 others. Decisions weren't a problem. I wear track suit bottoms and trainers almost all the time so I don't have to make decisions. Now I can't cope with stress. I feel sick,can't concentrate and just want to retreat to bed, alone. I can't keep up with even moderately involved conversations and have trouble problem solving. I used to be so organised.I have had a very stressful 3 years ( relocated back from abroad, moved 3 times since then, only child with parents in their 80s and witness to an arson attack in the block of flats where we live a year ago and still waiting for the court case) and had been wondering if this can sometimes be a trigger. I don't even know if I have Lupus.
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