Our last Topic of the Month discussion for 2017 is 'Depression & Anxiety'.
Depression and anxiety can commonly occur in people with lupus. It is often difficult to determine whether they are an integral part of lupus (as it is in some people), where management of the lupus itself often lifts these feelings; whether they have arisen in response to having a chronic painful illness; or whether they are part of an unrelated psychological condition.
We want to hear if you have any tips for coping with depression and anxiety if you have lupus. Have you found a particular therapy such as counselling or CBT helpful? Have any lifestyle adjustments helped you manage better? Do you have a good support network for when you need it?
We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at
I have certainly lived with depression/anxiety my entire life. I even had a psychiatrist tell me that he didn't know whether the anxiety caused depression, or the depression caused the anxiety. Both are debilitating.
It took me 30 years to figure some stuff out. I cannot control the depression when it hits with simple meditation, or getting out in nature. Nature walks help a lot, but sometimes do not bring me out of the sadness.
I discovered holy basil to control cortisol (adrenal fatigue aid) which I believe increases when I am stressed or my body is stressed, and this herb controls the cortisol production, therby decreasing my anxiety, panic attacks. I have also taken natural stress relief tablets. (No name brands allowed). I take passionflower for anxiety, and lemon balm for depression. Better absorption with a lemon balm herb tea. You can make yourself. My negative thinking stops when I take this.
I was on zoloft for a year, when I saw that psychiatrist. I went off it when I started getting chest pains, numbness in my leg, and my soul was taken away by this medicine.
My anxiety and depression is manageable now with these aids, plus healing my gut, liver and thyroid with differrent aids.
Thank you so much for sharing your experiences and tips. It is wonderful to hear that you have found some natural tablets/teas that help with your anxiety and depression.
I know what you mean about zoloft...I do my best to not be flat-line in feeling...I like your herb way to feel better...I'd like to get of of Zoloft...then the scary thoughts start creeping back in.....
My name is Sybil. I have been diagnosed with major depressive disorder since I was 16 and before I had any symptoms or diagnosed with lupus.
I'm very happy that you've found natural remedies for you depression and anxiety!
I'm concerned that the lemon balm tea will cause a reaction with the medication that I m currently taking. I think that I will give it a try, the reason that I m writing to you is that I have liver, thyroid and gut issues as well and I was wondering what your taking to help these diseases. I would appreciate it if you would contact me with the information. My direct email address is Sybil.heilweil@gmail.com
Warm regards and wishing you a happy holiday and healthy New year,
I would definitely recommend discussing any complementary therapies with your consultant before trying them so that they can advise you about potential adverse effects or interactions with other treatments. It is important to remember that everyone with lupus is different and what works for one person may not work for another or could potentially be harmful.
I agree Paul, as I always note to talk to your doctors first to see if the herbs will react poorly with their medicine. This could happen, but I know many that treat disease naturally and have been successful.
All my problems are not gone, but I am staying off medicine that could potentially harm me more. I am better than I was 4 years ago. I talk to nutritionist for help. So, I must be doing something right. And yes, everyone’s body is different. I agree with that.
I've used the "5 Ways to Well Being" approach to mood maintenance as a basis for staving off depression. It's been quite effective, and I've been fortunate because, as a mental health professional, I have lots of experience and resources I could draw on.
Even so, I've found my condition has presenting some challenges. I've gone from being in full time work and mountain biking in my spare time to being almost housebound within less than 18 months. I very quickly lost touch with people and often felt isolated in facing some pretty scary new health problems.
What's helped most has been 1. Setting myself small but meaningful tasks to fill each day 2. Doing little things to help make my garden wildlife friendly - the bonus being that I get to watch the birds, butterflies and hedgehogs that come to visit 3. Using Skype to keep in touch with people who I can no longer visit or meet up with 4. Sending random messages or little gifts to people I care about 5. Finding the LupusUK forum - where so many people have helped me feel less isolated
Although I've not had any problems with anxiety before, there have been times when my symptoms have made me feel very anxious. The most effective thing has been to contact someone - on the forum, on the phone or wherever to help me calm down a bit. x
Thank you so much for sharing your experiences and tips. Is there anywhere you can recommend for other people to read more about the "5 Ways to Well Being" approach?
Are there any symptoms in particular which has resulted in feelings of anxiety?
The 5 Ways is quite well described on the MIND website, where there are also links to go further mind.org.uk/workplace/menta...
Anxious-making symptoms? For me - heart ones like palpitations and chest pain (extensively investigated but never explained); and episodes of shaking and sweating (also so far unexplained).
One particularly infuriating experience is that of feeling that one is not being listened to by medics and they attribute some symptoms to "anxiety" when you know that is not the case. Then you see them interpreting your urgent attempts to explain why as further evidence of your so-called "anxiety"...
Thank you so much for the link, that's really helpful and I'll definitely include it in the blog article.
I can appreciate why those symptoms would cause anxiety. It must be very difficult to get doctors to understand when those symptoms could also potentially be caused by anxiety - a chicken and egg situation.
Have you found any ways to help doctors understand that these symptoms came before the feelings of anxiety and need further investigation?
The short answer is No. To be fair, I have been able to get onward referrals and investigations, but the whole system is so fragmented and filled with delays - 8 months for cardiology; 7 months for endocrinology and so on - that pushing me towards "anxiety management" is a way for my GPs and rheumy to feel they are doing something in the meantime. A good medic will say this openly; a less good one tries to bluff his way through it. x
I believe my depression correlates with my fatigue. So the more exhausted I am it sneaks back in with negative thoughts.. it’s very difficult but I know that with mindfulness, light exercise, healthy food, social contact it will eventually lift.
I used to get bad anxiety and was told that the two go hand in hand...
Thank you for sharing your experiences. Have you found mindfulness, light exercise, healthy food and social contact to be helpful? Is there one in particular which you think is more helpful than others?
A piece of info about Amitriptyline you might like to include in the blog. It can be used for anxiety/ depression as its a relaxant and helps sleep. Much higher doses are used if it's taken for depression as its also an anti- depressant that's been found to be helpful for pain relief!. If used for pain then dose has a ceiling amount at 50 mg as any higher and your more likely to get side effects and no pain relief benefit!.
I do find that if I'm flaring depression can be one of the symptoms I have and then if steroids bring the inflammation back under control they disappear!.
I have found Headspace meditations really helpful for coping with having a chronic illness.
My apologies is this is asking for TMI, but I have been on and off many medications recently to combat both depression and deal with widespread nerve pain as well as the joint and SI pain. I looked up the one you mentioned. May I ask if you have found it to be effective? If so, was it the first you tried? Does it treat certain forms of pain better than others? Did the mood boost happen around the same time as the pain improvement?
Sorry, lots of questions! Pain and mood management together can be so difficult to achieve. It's refreshing to hear a positive account.
I have nerve and joint pain too!. Tough to deal with and as you rightly say hard getting pain and mood mansgement to work at same time. !. Amitriptyline did give me this at same time and relief for nerve pain. You start at lowest dose 10 mg, take it at night as it can aid sleep by making you drowsy!. You might feel groggy next day, I don't, Definitely worth trying as is Gabapentin or Pregabalin for nerve pain . You might also benefit from going to a pain clinic as they treat pain in several ways!. Pills, injections and a self management course. Also gentler physio!. I have a lot of help from one!. Hope I've answered your questions and info is helpful,feel free to ask anymoreX
Thanks for the info! I’ve been in the pain circuit for about 3 years. After 7 procedures (including burning the nerves in my sacrum) and god knows how many steroid and PRP injections, I had to stop. We noticed that all the poking was doing no good and set off a massive Lupus flare. That’s actually how we figured out I had it!
I did try non-opioid options, they didn’t work. But, I haaaate being on these types of drugs, personally and physically they just aren’t good. But for now, they are they only thing that give me a few hours of relief. Now I have to say, my other autoimmune disease is known for causing crippling pain because it eats away at all the tissues that connect my bones and muscles. So, layered on top of the lupus pain, can get pretty nasty.
But, I want a safer solution for sleep and muscle aches/pains. This sounds like it might be an option.
I'm so sorry katidid that you have such a lot to cope with. Amazing that the pain procedures triggered your lupus. Trouble is once we have one auto- immune illness it's easy to collect others . I have too but not like you did!. I have also had multiple injections for my nerve pain and luckily touch wood so far no complications just help over a long er time than you. You were very unlucky but had had a lot of procedures in a short space of time!. My pain only responds enough to opoid S but like you I don't like them but we need the relief don't we?. I'm glad you feel Amitriptyline might help . Keep us posted how you get on with it. I hope it helps. X
Just saw the doc and got a prescription yesterday. Going to start slowly and gradually increase over the next six weeks. I’ll let you know how it goes. Fingers crossed!
I've taken amitriptyline on and off too. It's not strictly a pain killer in the way that paracetamol or ibuprofen is. Instead, it works by altering the way your body processes the neurotransmitters serotonin and noradrenaline - which is also what things like SSRIs (sertraline etc) do - and it takes a few weeks before the changes in biochemistry kick in to reduce pain perception, and improve mood. But you will probably feel more sleepy straight away!
When I first took it, it was for nerve pain following a femur fracture at just 10mg at night. I felt it did help a bit and took it for a few months. Later, it was suggested I try it again to help with "fibromyalgia" - i.e. chronic fatigue and insomnia. I went up to 30mg a night and definitely felt a lot more sleepy, all day! But it didn't seem to help with my fatigue or sleep quality. When you come off it, you have to reduce gradually.
I have never felt it's had a big impact on my mood, but maybe that's just me. x
Thanks for the info! I’m seeing my neuro/pain manager today. They’ve had me on the types of meds that are dangerous over the long term, and I’m looking for a safer option for the myofascial and all over nerve pain, which is just my nervous system gone wacky. I’d rather use the fast acting stuff for my acute pain which is mechanical in nature but aggravated by inflammation in my lower spine.
I've had bouts of depression since primary school. I'm a bit of an outlier here because what turned into bipolar disorder was there years before the physical problems began. In my case the psychiatric medication is a "must".
Through the years I've developed a number of strategies to help ward off the downers. I had years of therapy, then CBT, and mindfulness. Mindfulness can be helpful because you can do it any time, and was recommended by my Pain Management Service. Try it when you're washing up! Mindfulness helps most with the pain.
Yes, I do go on and on about knitting, but for me it's a good way to switch off from other thoughts and is my favourite mindfulness. As an experienced knitter I have ways of coping, even with painful sausage fingers, but I think other hobbies that don't require much physical effort can help.
Here's a link. It's about knitting a crochet, but the principles behind it coukd apply to other crafts stitchlinks.com/index.html
I found out when I was seriously ill that I am a natural person and as mentioned here, I find getting out in the garden or near the sea helps me when I get flares. Even being followed in the garden by a little robin gives me great pleasure or spotting some turnstones and watching their antics by the sea.
I have learnt to listen to my body, but as I have mentioned before I use muscle testing and basil helps me, but only when I need it.
Whether it was the damage to my body that nearly killed me through the wrong surgery for me and the wrong drugs with my penicillin allergy or a combination of that and genetics, I don't know, but all the terrible symptoms surfaced strongly after the hospitalization in 2000.
I, too, set small tasks and keep focused on these each day.
Before going to bed, I think what my tasks will be for the next day and rise with the intention each morning. If I am too exhausted when I rise I either do meditation if I can't do anything physical or I do sitting tasks of writing, sewing, etc.
The doctor prescribed antidepressants in 2000 when I knew a physical problem was the root.
I am a very sensitive person and the drugs just made me suicidal or even 'mad', I would say. My husband said for goodness sake stop the drugs they are making you worse. I did so and use natural means through complementary knowledge I have acquired from experts in the field.
A flare brings on the depression and anxiety for me because it makes me feel bad and I can't do the things I wish to do and if you can't do what you want to do then you think about the situation more and that makes it worse.
I do my best to get my mind off the flare, but have to be careful and listen to the pain, too. Over the years I have found my body tells me what has caused the pain and I need to learn from that.
Depression is not the cause or the anxiety, but the physical person I am.
I care about the world and people, the environment and the climate - I consider I am reasonably intelligent and that makes it worse because I can always see the possible negative outcome of something.
I have to work hard to think positively that the better outcome is possible especially with what is going on in the world at the moment as well as in our country and my area.
With our health system apart from the emergency health services and transplants, etc. I feel that the system lacks a real sense of wishing to heal people and this frightens me. Trial and error is dangerous for a sick body.
I have learnt to speak up to doctors whom I always trusted with my health and made a big mistake doing this, for most of them didn't really have a clue what was right for me nor did they ask. It was a black doctor who made me think about this when he actually asked if he could examine me. All doctors had told me they needed to examine me - not considering 'me or my wishes' in the equation.
I am still learning to deal with this distrust I now have and take time to think if doctors want me to take a drug. I ask questions and look into the ingredients and I say 'NO' if it is not right for me.
This is a big step in dealing with depression and anxiety for me because if I am ill, I always tense up when I think I may need to see a doctor because basically I don't believe they have my interests at heart or want to heal me.
I love the way you put our relationship with the natural world at the heart of our well-being. I see it that way too. I've also thought a lot about the doctor/professional - patient relationship. It seems to me that there are lots of problematic issues here. One is the hierarchical structure of medicine, which raises the (usually male, middle- or upper- class) consultant above "junior" doctors, "junior doctors" over nurses and so on. I have so often watched friendly, modest, open-hearted young doctors turn into hardened, closed, consultants as they are forced into taking on more and riskier responsibilities and treated with greater deference and false respect by those around them. At the same time, to really connect with patients and be with their pain and uncertainty is emotionally unbearable for the vast majority of us. It's about the organisation of medicine and society rather than the individuals in it, don't you think? x
So much of what you say is true. Seeing it from the doctors' perspective - lack of time and needing to 'toughen up' to face problems of others day in day out must be very draining, but the system needs to change and it will I am sure because it is not working at the moment. It needs to put the patient first rather than like you say - the organisation of medicine including diagnosing the patient to fit what medicine is available to give out, and not aim at society or statistical beings but real people with differing needs and health issues.
My lupus started when I got very depressed due to family issues. I was very young. That was my initial trigger. Then, all the pain and the symptoms that I couldn't understand kept me depressed. Plus, the new life that I had to live because of my lupus. I was a teenager and I was missing all the fun and living a painful life. Additionally, the high dose of steroids I was given didn't help at all. Still get very depressed when I'm treated with steroids. It's a kind of depression, sadness, that I can't control on my own; it's beyond my mind's control. It's difficult when I have to take them but needed as they have worked well with every flare I've had. The flares make you feel weak, sad. I also suffered from anxiety, and I was medicated for this. I didn't know what kind of future I was going to have because of my lupus and I was feeling incomplete that I wouldn't be able to keep my career, my job, to have a family, etc.
Learning about lupus, symptoms, treatment, myself, my new life with lupus truly helped with depression. After so many years with lupus, it is more difficult to keep depressed. My family's support was essential. And to meet compassionate people and other lupus patients also have helped.
Thank you so much for sharing your experiences. I am really pleased to hear that you have had good support from your family and others, helping you with your depression.
My stock standard soapbox ranting response - profound apologies. This doesn't really fit into this stream.
................................
*Respect
*Affirmation
*Validation
*and Action from Doctors.
Instead of Discrimination based on Social status, Gender, Race, or Psychiatric and intellectual status.
I believe many SLE sufferers are marginalized by one or most of these factors and this leads to a cumulative trauma that's akin to Post Traumatic Stress Disorder - but without the Post.
Without a sense of fair & adequate medical care and without the comfortable sense that a lot of healthy people have - that my body isn't going to randomly malfunction - I've managed to accumulate forty years worth of trauma and barely suppressed rage.
I'm 49 years of age now - but when I was in my twenties a GP warned me I could reach a point where I'd become so fatigued from fighting both the SLE - and various forms of Doctors and medical systems - that I may just stop looking for the medical care to needed to control the Lupus.
She told me this is the danger zone where people with serious levels of illness literally do die - not from the illness itself but from the fatigue and trauma of trying to stay healthy.
I do spend a good part of my time trying to figure out how to co-ordinate my own medical care (from an isolated rural area / Australia) and prevent discrimination from occurring. In the past I've found it difficult to balance this miserable vigilance with anything akin to the a normal everyday existence.
But over the years I've found - 'giving myself' - dedicated times to think about the grim stuff that needs to be thought about (and treat it like work) - and dedicated times for pleasure - no matter how seemingly small - is one way of coping. I don't sit down and timetable it. Its more like - if I've found I've spent an hour becoming frustrated trying to sort out medications, I'll make sure I spend an hour and a half doing something - non medical. If I become miserable with symptoms of illness, I'll gently try and ease my mind into concentrating on inner and outer things that have nothing to do with the SLE.
I try - but don't always succeed - in catching myself when I'm mentally fighting with my own medical symptoms - (and simmering resentments). Again I - try to gently ease my mind into stopping it. It is a kind of mindfulness. Letting the nasty thoughts and symptoms come and go 'gently'
Not abruptly fighting the thoughts. Its maintaining a sense of even calm.........when you're able to and can - and accepting myself when I cant. Anger is sometimes valid and for me - keeping it bottled up for years has been very mind bending.
Many moons ago I also had to make the decision not to compare my life with healthy people. Its a bit like some forms of meditation to reduce anxiety, you know they're there - you encounter them, but you don't have to dwell on what you 'think' you're missing out on. Its hard - but I try to drop all envy. - I'll steal the Buddhist ideas on this - its the actual 'craving' of a perfect and happy life that makes you miserable - not the imperfect life itself. Don't (overly) dwell on the past or the future - the only moment you have is now - 'just be' in the moment - right now - and always tend to yourself with love and compassion.
When I'm actually calm enough to do it - meditation has helped me. I treat meditation itself as a bit of an unusual chore that has to be done - but making sure I do it regularly has maintained some sanity and helped clear and clarify my perceptual state. Some of the best thoughts have come while meditating.
more soap box:
Having a sense of meaning is important. Always remind yourself - your life is meaningful. You may never figure out what the meaning is - and you may waste a lot of time flapping about trying to figure out what it is...... but its there.
The lives of Lupus people are different but no less valuable than any other.
Our perspectives and insights on life are unique because of the very nature of the path our lives take. It builds empathy, insight, strength and a form of valuing aspects of - time and the nature and value of life itself. It the stuff a lot of healthy people often never get the opportunity to contemplate.
If I'd been healthy all my life what I consider valuable now would never have occurred to me. I'd be a very different person.
I'll misinterpret Buddhism again - take time to observe and nurture the flower that grows from the the compost. (suffering)
Its how I've remained semi sane at least. Always take a step back, be gentle with yourself and nurture the flower even if its a little bent out of shape.
"I believe many SLE sufferers are marginalized by one or most of these factors and this leads to a cumulative trauma that's akin to Post Traumatic Stress Disorder - but without the Post"
THANK YOU FOR SAYING THIS!!!! It's been on my mind so much lately and you are 100% correct. We need to bring awareness to the trauma aspect of this. There is a lot of focus on the other aspects of mental health, which is crucial, but as you said the social impact and discrimination is out of control and, like you, I think it is absolutely leading to people not just suffering from anxiety and depression but from a definite form of (P)TSD.
Yes, I think we probably sit at the intersection of a number of stigmatised and/or marginalised conditions and groups. For instance, it's a chronic and very debilitating illness (so we often end up unemployed or dependent on welfare); the predominantly female (and often Afro-Caribbean) patient groups; our symptoms are often "invisible" and there are no glamorous interventions that heroic doctors can show off; etc etc. "Despair but never submit" is my slogan for the week! x
Thank you so much for sharing. A lot of what you practice does sound like mindfulness and it is good to hear that these coping mechanisms have been helpful for you.
I sort of worked in reverse. Although I'm not a Buddhist, Buddhists seem prone to accuse me of being one - so I was introduced to meditation and mindfulness via that discipline - instead of the psychology route.
This helped me integrate what suited my slightly blippy personality best into a way of coping.
I didn't try to change or correct my personality and how trauma has formed it. I learnt (and am still learning) to accept me and the more terrifying aspects of life (and death) - as everybody on the planet has to - in a gentler and accepting way.
Great post. I like especially the point about not comparing yourself to people who are healthy. It's so corrosive. "Oh Jerry, don't let's ask for the moon. We have the stars" - as Bette Davies once said. x
Thanks for that whisperit. And thanks for summing what I was clumsily trying to say. Its hard to put into words.
: )
I really liked your observation about the - 'hardening' and narcissism that occurs to good Doctors as they progress to senior positions. ie: Professorship. I've seen this with my own eyes too.
I've always thought some Doctors - even if they start with the best of intentions - must have a slightly deluded view of themselves - or the job - if they're willing to take on the near impossible job of medicine in the first place - with all the inevitable mistakes and trauma that goes with it.
I think many of them when they make high consequence mistakes tend to just shut down - not think about it and move on.
So nothing is learnt and they don't evolve to become better Doctors.
X
The combination of fresh air, vitamin D supplement and gentle exercise - and being at one with the natural world for a period of time during the week - have been far more important to me than any specific diet or medication.
Feeling trusted and believed is so important to most of us too. So health professionals who heed rather than merely listen for long enough to judge - play a big part in whether or not I can stay reasonably sanguine despite pain or sensory overload or the mind blowing fatigue.
Also, for me personally, understanding, albeit in a basic way, what is causing my symptoms is key to keeping my head above water. As a complete non scientist this hasn’t been easy.
But what I can’t understand, I then really struggle to believe in - which puts me into a state of denial - which in turn causes tremendous crashes in mood. And forums like this have helped me learn.
So in the words of Galileo — “All truths are easy to understand once they are discovered; the point is to discover them” understanding the basic mechanisms behind my symptoms has been a way of avoiding occasional depression and frequent anxiety attacks. What I can make sense of I can better accept. Acceptance is key to swimming not drowning for me.
If I know that my family are safe and well and if there is the prospect that I will get into my studio and make my artwork again - then I feel relatively blessed and my anxiety levels are kept in good check.
Thank you Hidden . It is really interesting that learning more about your condition(s) and understanding them better helps to reduce your feelings of depression and anxiety.
Do you find that your art helps a lot to relieve feelings of anxiety and depression?
You’re welcome Paul. When I’ve got the mental and physical energy for my work it can be therapeutic - but it is my job/ career. Singing and Pilates and walking the dogs on a beach on a lovely warm day or having a hot bath with eye pads are probably more therapeutic for me personally!
I will definitely contribute a story here, just need to pull my thoughts together. But, I wanted to bring up something that is maybe just specific to me or perhaps others have experienced this.
Oddly, I find mild exercise worse. Call me crazy, I know. Gentle walks weight bearing activities cause me more pain and fatigue and don't provide me with any lasting improvement. For the sake of my heart, lungs and muscles, I do them.
Now, go figure: short higher intensity exercise works better for me or even longer, medium intensity. It provides a couple of hours of pain relief (I’m guessing because it boosts all those good endorphins in my brain) and increases my energy over the next day or so. Whereas gentle exercise has made me collapse in the past. No joke.
I worry that this may be related to a dysfunction in my adrenal glands and that it’s the only time my body really cranks out it’s own “juice”. It may have to do with the long term use of steroids, but curious if anyone else experiences it.
I will say, tho, if you do exercise and you really LIKE that form of exercise it has a much bigger impact of your sense of wellbeing and reduces symptoms. I adore being in the pool. I don’t swim, but I do a whole bunch of exercises, play around, float and always end with a 20 min water jog. 2 hours of zero pain and pure happiness. I do it at night (in a wet suit to stay warm) and when the moon is out it truly is pure tranquility. It’s the best antidepressant I’ve tried. Bummer it only lasts for a few hours, but it does provide a much needed reprieve.
Thank you for sharing. It is interesting that you find higher intensity exercise much better than gentle exercise. I think you are absolutely right that doing an exercise you enjoy excellent for wellbeing and swimming is a great example. Other people may enjoy activities that they can do with others, things like a walk in the park or a game of table tennis.
I don't think I've got to the point of thinking up strategies to deal with low mood, only that I can feel it's impact. I think as people have said here, it's a number of things relating to the illness. Never having enough energy for the things you want to do, mental confusion, and constantly feeling like something's about to go wrong. Flashpoints for me are the life and work limitations or constraints (accepting that I will never achieve what I wanted to), missing out on social occasions, and never having enough energy for my super energetic child. It feels like that constant need to move around, to achieve, to progress, is no longer possible for me - that Lupus has really just hit at the core things which make me, me.
What compounds it all is the political environment, which underlines the lack of compassion and sheer brutality of the society in which we (or at least many of us) live.
Safe to say I am reading your coping strategies with interest. Thank you all.
Thank you for sharing. I definitely see that a feeling of loss is often a big contributor to feelings of depression. Whether that is losing the ability to do things you used to enjoy or not being able to do things in the future. There is also the worry about letting other people down.
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