Research consistently shows that people with long-term physical health conditions also have mental health problems. The impact of emotional and mental health problems can significantly reduce people’s ability and motivation to manage their physical health.
Does this resonate with you?
If you feel comfortable, please reply to this post discussing how your health condition impacts your mental health.
Thank you in advance for sharing your experiences 😀
Anna
Having extensive bronchiectasis from the age of 3, I was brought up in the school of tough love when it came to dealing with my condition. There was no such thing as depression or demotivation when it came to living with it, doing what was required to keep me going and going through the times when it made me very ill. I was responsible for my own physio, my meds and recognising when an exacerbation was raising it's ugly head. If I missed school I had to catch up. I passed to Grammar school. No allowances were made for me. I had to do and have always felt that I had to prove that I could do the same as everyone else. As an adult I have had to work my condition and my life around each other. Yes, it is time consuming and hard work to do everything that is needed. Some days the exhaustion is awful but giving in to it is not an option. And yes, sometimes I could kick the wall at the unfairness of it all. Proving that with this condition at 73 I can get a brilliant feedback on Trip Advisor for my guiding at a local heritage attraction ( together with a certain amount of b mindedness) is what keeps me going.
Thank you for taking the time to share your experience of how having bronchiectasis has impacted your mental health. It takes strength in managing your condition over the past 73 years, and am glad to hear that you have found ways to keep yourself going 🙌
I am from Hindustan Aka India. During last year I was transmitted with Covid leading to Pneumonia affecting 35% of my lung. Hospitalised for about 11 days to get over that with Oxygen support for many days. The solitary confinement during these 11 affected my mental health so much so, it took almost ten months to get over the mental agony. Recovery from the virus was a lengthy process, and experienced long-term health effect such as difficulty in talking continuously, unable to walk etc. even after recovered from Covid. Now after 13 months almost back to normal but still sometimes the past experiences haunts.
Thank you, klgksharma, for sharing with us the impact that COVID had on your mental health. I believe that your story will resonate with people who were in a similar position as you.
Hi there, For me it was after an accident whilst in the army where I was partly crushed which broke my back in 4 places, damaged both knees and hips along with damaging my neck along with all joints in my body at the time I was told I just had back strain and was given 2 weeks off which seemed OK at the time except for running on paved area's on soft ground I was OK or OK enough to pass my annual bft (battle fitness test) where you have to march as a squad for 1½ miles then straight after you have to run for 1½ miles within a set time depending on your age but for most it was 11 minutes I could manage it if it was done on soft ground but not on hard ground I managed to stay in for a further 6 years but due to the rules about pensions where your pension is based on your rank and that you cannot be promoted beyond sergeant if medically down graded which ment I could not expect a decent pension so I asked the doctor if he would put me for a medical discharge he told me that there are very few jobs available at the time I said I have always managed to find work when I wanted it so I left since then I worked full time until my doctor told me he could not sign my medical as fit to work (he had been telling me for 7 years) so I stoped work sold off my business then sold my house and bought a boat and went sailing for 10 years in the Caribbean which reduced the amount of pain I got from my back I have been back in uk for almost 11 years I am on several different pain medications full time which reduce the level of pain I have it never goes away fully but when it drops I can do most things except for standing and walking any walking is painful along with trying to stand for more than a couple of minutes many days I cannot even get out of bed without severe pain and cannot get myself dressed so I just keep my pj's on, on bad days if it was not for my hospital type bed which lifts me up to a upright position so I just swivel myself round and using the hand rail I can manage to stand upright or as upright as I can then slowly make my way to the front room then as long as I take it slowly I can get to the kitchen to make a cup of tea which along with a few plain biscuits is my breakfast then sometime in the afternoon I will have a frozen meal which I do not like the idea of eating but I know I cannot manage to stand long enough to cook a real meal I use to enjoy cooking but I doubt that I'll ever do again in the future.
I am now almost 70 and except for the damage to my back and joints I feel fairly fit it is seldom that I see my doctor I see a nurse every 3 months for her to give me an injection for my implant which is around the size of the needle they use to put the chip in a dog when anyone sees the needle they ask if it hurts but for me I don't feel it which I think is due to the amount of pain killers I take every day, I do get down at times once I decided it was not worth continuing living with the amount of pain I was in but now I am not that bad I just think about my children and grandchildren and what I would miss if I was dead, I try to always look at the good things that are going on and ignore the bad things, once when one of my knee's gave out and I fell I ended up on my back trapped between the settee and the wall with my arms and legs in the air I just laughed about it I thought that I must look like a turtle lay on its back with its legs in the air it took me around 30 minutes to manage to get upright everyone said I should have called them but I did not have hold of my phone so I could not call anyone and even if I did phone them they could not get in as the doors were locked.
I never had any health conditions prior to Anxiety and depression. I think in my own case, Anxiety and depression brought other health conditions like elevated BP, high cholesterol and prediabetes. Remembering these conversations alone raises my anxiety level from zero to 100. These days, I fear going to my PCP for fear of checking my BP and telling me that it's still a little bit high. I also fear taking medications due to my past experiences with antidepressants.I wish all these will go away for me to live my normal life.
I was born before war with PCD, before NHS, not diagnosed until age 32. I curse the bad affects now that have suffered all life, and do all I can to keep active, Nebulising, Aerobika, exercise etc. As widow living alone my time is precious. Previously I worked full time, was director of two small companies, did both jobs from one desk, with two different telephone lines, and worked long hours. I’m determined to stay active, although I don’t go into public areas, etc, because risk of covid, flu etc. My mental state varies, sometimes feel bit lonely, but don’t give into it. Like HU as informative and interesting.
Thank you for sharing your story, Morrison10. I am glad to hear that HealthUnlocked has provided you with a safe place to connect with other people.
My major conditions are pulmonary toxicity secondary to dronedarone and amiodarone that permanently damaged my lungs and, a stroke that affected my peripheral vision on the right-hand side. The damage to my lungs meant that I was clinically extremely vulnerable during COVID, and therefore had to avoid anyone other than my wife. That was / is compounded by the stroke with the principal effect that the DVLA revoked my Group 1 (car) driving licence six years ago, and currently require that I have a normal field of vision to apply for a provisional disability assessment licence (PDAL) for a driving assessment.
The consequences are two fold. Social isolation during COVID with the knowledge that I was close to death from pulmonary toxicity, and any lung infection then and now could be critical. The loss of my driving licence means that I've permanently lost my independence. I can't volunteer as much as I would like, as my lung issue means that I still avoid public transport. Then there's the frustration and unresolved anger of dealing with non-medical administrators in the DVLA and delays in the system - application in June 2021 and still unresolved - stating I must have a normal visual field. An expert in sight issues caused by stroke, has confirmed that an improvement in sight after twelve months is "very unlikely".
I mitigate the mental issues as far as possible by involvement with medical organisations to bring about change. The AFFIRMO WP4 study is an example.
john-boy-92, you show such courage and strength despite the health struggles you have experienced. I can see how isolating it must have been for you during COVID and hope that HealthUnlocked can provide you with a safe way to connect with other people.
That's kind of you.
Can I encourage others to be lived-experience participants. Four very recent examples of my involvement:
* Bristol University study for NICE - I now know one third of people have a mutation of the gene that metabolises clopidigrel. I can see this as a springboard for other conditions.
* Part of local Primary Care didn't know about regional stroke services major reorganisation in Secondary Care. Flagging it has brought about an information day for clinicians, stroke survivors and carers.
* Web site redesign and feed back form comments for the Stroke Association.
* Comments to the Department of Health and Social Care on living with major health issues.
I really think that whatever I put in, I get back many times over.
John
It largely depends on if you have a predisposition to Mental ill-Health.
Hi Anna, luckily my physical health is ok, so it doesn't effect my mental heath problems, but I can definitely understand how this would add to depression and anxiety problems. Just one more thing to dwell on and worry about, along with everything else. Reaching out for mental health help is difficult enough, then having to deal with physical health problems on top of that would be overwhelming.
When I was about six and running about outside playing, I started getting chest pains. I never mentioned this at home and I was diagnosed with asthma in my mid twenties when my daughter was a baby. There are many triggers which affect my asthma. Over the years (now 69), I have learned more about the triggers and take responsibility for monitoring my condition. When younger and working, other things and family responsibilities were a higher priority than my health. When I developed osteoarthritis, I kept active while waiting for surgery and continue to do so now in order to keep as fit as I can.
With life’s problems and traumas, I have always tried my best to cope but struggle with my weight as food is such a comfort.
Thank you for sharing your experiences Moreless. Keeping fit is an essential part to a happy life for sure.
Keep moving is very important for us all especially as we age- when we have osteoarthritis movement is painful but helps keep a good muscle tone to hold your skeletal frame.
I am78 and have suffered with anxiety and depression since my 20s. Brought on because I grew up in the 60s when if you didn’t look like Twiggy you were probably not popular with the opposite sex.I have many memories of overweight shaming publicly and not being popular with boys like my friends were. This caused an eating problem and my weight has gone up and down all my life. It still affects me now.
I am divorced with one son who lives in France. I live alone and am hating growing old alone.
I broke my arm at Christmas so haven’t been able to drive so I have been stuck in my house alone with some respite by a few good friends. Last week my beloved 17 year old dog was put to sleep. I have never felt so depressed or anxious as I have for the last 3 months. Also at 35 I was diagnosed with under active thyroid and given Levothyroxine. I thought this was the answer and medication would transform me. It didn’t.
Depression & anxiety have ruined my life and nobody or anything g have been able to help me
I am sorry to hear that you have spent so much of your life navigating your mental health. I would like to take this opportunity to remind you that people are always here to listen and support you through your struggle. Here is a link to our mental health services and resources for your convenience: support.healthunlocked.com/...
You are not alone here. You can't see the people who read your post and empathise. That may sound shallow, but you can get through it despite life being rubbish at times.
hello I can absolutely empathise with you , i suffer from anxiety,severe depression and Complex post traumatic stress disorder due to ill treatment and abuse in children’s homes, it started around 8 years old li also developed self harming and suicidal behaviour in my early teens I was diagnosed with depression at the age of 19 when I tried to take my life and I was given antidepressants since then I have had several types of antidepressants I also have had various counselling through the years also psychological treatment and CBT therapy these were only put into effect when I was on the verge of suicide and they were short lived in 61 years of living 30 years have been spent in depression and sheer despair, I have been robbed of half my life due to the actions of others trying to get help is a battle of its own and at the age of 55 I developed physical problems multiple pain on all my joints which was diagnosed as fybromaliga , when in fact it was the start of osteoarthritis and within 7 years I am now riddled with it I have had several operations including a total knee replacement I have multiple prolapse discs with impingement in L3/L4 and also impingement in my neck C3 and right shoulder, both my thumb joints are gone I have steroid injections on both hands and every 6 months I have a guided cordial epidural in my spine for pain all this causes chronic pain and tiredness the last few years I developed RLS which for me is the final straw I am on medication for it but it still breaks through I amUnder the multi skeletal consultant who keep trying the get me to go In Pregabalin or Gabapentin both these drugs have side affects huge weight gain the last thing you need when your body is already coping with pain when standing and walking, all this has severely impacted on my mental health which was already severe enough beforehand i pace the floor at night with pain and RLS I battle not to give up I feel isolated and hopeless with my situation our mental health support is overwhelmed in the UK and sadly in lots of areas in desperate need of a shake up as they do not provide the services to the patients that is needed it’s a minefield and you either sink or swim when I come on this site to read other other peoples opinions experiences and despair who are looking for something, some kind of hope or medication breakthrough it makes me feel so sad and helpless that there is no magic pill what the answer is I do not know and with all the medical staff, hospitals ,Gp’s under so much pressure I cannot see anything changing anytime soon .
Hello I’m so sorry for your pain you have been quite a warrior. Your scars mean that you survived everything that could have taken your life. Where do you get the courage and strength to keep moving forward I am amazed .!
hello and thank you so much for your very kind comments, my whole reason for not removing myself and ending both physical and mental pain is my six beautiful grandchildren the two eldest Poppy and Ollie are both 19 and at universities then there is Reggie and George 17 and 11 both very talented one a footballer in a league team then the youngest two Harry 9 and Daisy 9 Harry is also in a football team and shows such Promise and Daisy she is horse crazy she has ridden for two years now and belongs to the Pony Club and attends the stables twice a week riding and caring for the beautiful horses I go also with my daughter .Kelly , Daisy’s mum I always feel my happiest around animals especially elephants and horses there is nothing better than the love you get back from them there are are over 20 horses at the stables and they all know us now we have 3 dogs also who are very much loved within our family too, I could never leave my children and my grandchildren with the legacy of misery that suicide causes my husband took his life in 2004 and we never got over it my son and I found him the pain has never gone away it is 19 years today since he died the same year our first two grandchildren were born I cannot describe fully the pain it caused and as I have no natural family it was just me holding us all together regardless of everything else that I was struggling with my love for my family is stronger and overrides the pain of living , I had a historical court case back in 2013 the man who ran the children’s home I was in was sent to prison at the age of 87 for 15 years for the crimes he committed against me I found out after he was found guilty that 3 of the boys in the home we were in had taken their life’s and he had previously spent 15 years in prison when he was convicted back in 1975 , I never knew he had been abusing other children too I thought I was just me , it totally broke my heart and when the judge asked him how many life’s he had destroyed he just shrugged his shoulders he showed no empathy I was just 8 when I first tried to take my life he asked him again how he felt listening to me when I gave my evidence he again showed no care , I never expected him to as he has no conscious, I have never recovered mentally from the trauma of what I and others had been put through, at 7 he took us to the BBC studios to go on live television with Jimmy Savile I was sitting right next to him and on that day he assaulted me , I carried that for years and all the other horrific memories of abuse I suffered at his hands and all the suicide attempts I made throughout my teenage years , so when I became a mother I had something to live for and a family that finally loved me I had 3 children they are 37.38 and 44 they all have 2 children of their own , they are solely and the only reason I stay I think the worse part of all this was when I was 40 I told my husband everything he encouraged me to report everything to the police it took a huge amount of courage and when I decided to go and make a full statement as soon as I told them about Savile the didn’t take me seriously and because I suffered from depression the as good implicated I was making it up which was a huge snack in the face and it had a massive impact on my mental health , it was in 2012 when it all came out about Savile that the met police special investigation team contacted me and asked me the details I told them everything all the details of the 3 children’s homes I was in and what had gone on in them and also about Savile they did believe and took on the cases and traced the men involved and prosecuted them I was added to the list of Jimmy Savile’s victims I was the youngest and all that mattered to me was that I had eventually been believed I received a personal apology from the Kent Police Commissioner, however it meant nothing to me it didn’t take back the trauma of not being believed I had come so close to suicide again because of how Kent Police had dealt with it , no apology would ever take that back or the mental anguish it caused me , there is so much more to all of this and it has always been my love for my family that has kept me going , if it had just been me I wouldn’t have survived as I feel no love for myself , after my court case other victims came forward ,every day is a struggle mentally I write post it notes of reasons to stay alive ,how sad is that ! I post them for when I go into that black hole, when I come out again I pick myself up truthfully I don’t really know how I have overcome everything I am just truly thankful that some how I have I have posted a pick of me in my 60th with my beautiful children and grandchildren , thank you again for you kind words x
Hi Anna, I have multiple autoimmune and genetic liver diseases. The main symptom for me is fatigue. I have had periods of depression, sometimes treated by medication, sometimes counselling. These periods of depression have been at times of stress, when I just don’t have the stamina or energy to cope with the demands on me. If I didn’t have the fatigue, I could do more, wouldn’t get stressed and then depressed.
Having a chronic illness means having to think about everything you do and weigh up whether you’ve got the energy to do something, whether you’ll be exhausted after and whether that will have an impact on other things you want/ need to do, or other people. I constantly feel that I’m missing out when I can’t do something. I also feel that I’m letting other people down or holding them back. Obviously your mood is then affected.
Having a chronic illness means lots of admin. Booking blood tests, ordering prescriptions, going to medical appointments. That’s depressing when there are things you’d rather be doing with your energy.
Every time you have a blood test, scan etc you’re on tenter hooks waiting for the results and hoping things haven’t got worse. It’s all added stress. And for me that’s every 3-6 months.
My mental health was at its worst when my Mum died of the same disease I’ve got. Nursing her at home was both a primal edge and totally devastating. Knowing that the way she died is what is in front of me unless a cure is found is scary and depressing. You do come to terms with it, and start to focus on the good things in life, family friends, nature, hobbies etc.
When life is a round of tablets and tests, it sometimes feels like ‘what’s the point?’.
I gave up work a year ago at 53 and feel better for doing so. Working was important to me and I was quite ambitious, but I’d go to work, eat and fall asleep on the sofa then repeat. The weekend was taken up with chores and I wasn’t getting to do anything that gave me pleasure because I didn’t have the energy.
Giving up work was a difficult decision and it has impacted my self esteem, but it’s given me the time and energy to focus on family, friends and meaningful voluntary work.
Finding meaning in life is critical to coping with a life with a chronic illness. Having social contact and doing something creative really help. My garden is my sanctuary.
As others have already highlighted, Covid has had a massive impact which is ongoing. Because I’m immune suppressed I have to be very careful. I still mask and get the funny looks. I only socialise outdoors, which makes winter very isolating. My kids test before they come to visit.
When everyone else is carrying on as if Covid is over it is depressing. You do really feel as if you’re missing out. And you also feel as if no one cares. I feel as if well people think that people with chronic illness should just stop whingeing because it stops others from having fun. I know that’s not true of everyone but on a low day, it’s how I feel.
But then the spring comes, the daffodils flower, I can go round open gardens with friends, have family bbqs and fall asleep in the sunshine with the bees buzzing and the birds singing so life is worthwhile again.
You made a brave decision giving up work, and I am glad it has positively impacted your self esteem and that it’s given you the time and energy to focus on family, friends and meaningful voluntary work.
Thankd for sharing your experience your honesty is touching. Always remember though when you are taking care of yourself you are not being selfish you are just saying I am important too . Don’t give up when flowers get crushed as soon as they get watered and get sunshine they stand up again. You have been able to do the same. You are stronger than you think.
Are these posts “locked” so that only people in the group can see them (and not anyone doing a search?)
This reply-only community is a one-stop destination for all things related to research. Whether you’re looking to take part, or simply just want to learn more about the scientific process, we have something for everyone. Members of the community can reply to all posts within the community.
Hi AnnaHU,
LuzyCLL is asking whether posts to this community can be found through internet searches (unlocked) or whether they are private (locked) per this HealthUnlocked Help page explanation:
support.healthunlocked.com/...
If posts to this community are unlocked then people responding need to know, so that they don't share information which they would prefer to keep private to a group within HealthUnlocked - not anyone searching for answers on what could be a very sensitive topic, such as this one - mental health!
Neil
Iam 46, liver damage due to a genetic disease called hemochromatosis, previously removed a precancerous polyp in the colon, plus other metabolic diseases.
With anxiety every time I take new tests, afraid of developing some kind of terminal illness, to which, due to my condition, I am much more prone than the general population.
Thinking about how much time you have left, things that you did not consider before. Life changes and you wonder why these conditions have touched you and you iterate on that thought. It is difficult for you to make plans for the future, because you focus on your current condition. Your character is affected and changes, sadder. On the other hand, your scale of values changes, you become less materialistic and you value the people around you much more.
Hallo. Have spondylitis thats taken 24 years to reach the end of fusing vertebrae together. Changes have been massive. Cannot look up down or sideways the pain has been mindblowing am on fentinal 150mm.my life has changed beyond imagination. Get very low at not doing anything I used. Ie swimming walking plus the personal stuff as in not reaching the bottom to clean properly.
Thank you for sharing your story!
My health condition has affected my mental health in contradictory ways.The very people who you turn to with bad health have caused me severe anxiety, Im undiagnosed and was apparently referred to a hospital in Bristol by dermy during covid saying they thought it was something rare, but have heard nothing and to a neurologist before covid and yet to be seen being told wait is until august 2024 although I did have bloods tested for certain things, but clinically not seen and as many and big symptom is visible this is worrying. My health condition flares and is progressing luckily at slow pace.Once referred or passed over I was then discharged and with an uninterested gp other than telling me im to wait to see neurologist, a lot of history of my problems is not taken into account, ive lost trust and its costing me , even one specialist I see said I hope you find someone interested I can see you are unwell and that is hard to chew when there is no one interested to date as its always not their specialisation and gp says he wouldn't know who to refer me to as systemic problems. Personally I think a bad rheumy appointment has led this song and dance and believe a good specialist rheumy may be of help but in an economic crises its not an option.Physically its hard, my appearance because of symptoms make it hard and a good doc could have eased this (Good gp left practice) with help or understanding .
My anxiety and self esteem are hard to deal with, stress from private problems add to it. I say contradictory as the other part of me is grateful that im not an emergency (yet, though with flare hhr so really should go to a and e) but barring this , im not as unwell as others who need immediate care and ive learnt to become a nicer person myself and more understanding with having health problems, I put things into perspective and am more tolerant and inclusive than ever I was, look at life through different mindset now , though I think stress can make you negative, and I don't enjoy life as I did so maybe that makes me not care so much I don't know but its contradictory. I don't feel depressed , stress and anxiety yes and I do enjoy certain things in life at times but just don't enjoy it or have the fight for it, it's hard to put into words. If you keep bashing into brick walls I guess something finally breaks, and with being told that nhs local hospital used to have a dedicated research team for looking into rarer things but non funding done away with them so now left to consultants who don't have the time for out of the box problems then its not good.Especially as class affords no other options for further help.
whatever it is that is my health condition its affecting my mental health negatively but with a plus side, I fear the diagnosis if it ever comes but nowhere near as much as this limbo and its the isolation and uncertainty it causes which I feel I needn't suffer alone if only the healthcare system was better. So health affects mental health greatly, mostly negative with a small positive part.
Thank you stiff19 , for bravely sharing your story with us. I can see how your journey with your health has impacted your mental health but can hear in the way you have written your response that you are strong. I hope that HealthUnlocked can provide you with additional support so that you can see a greater positive impact on your mental health.
I would absolutely say that physical health affects mental health. I have had a significant pain condition related to a nerve entrapped in scar tissue from a previous abdominal surgery. I get regular nerve blocks to help with the pain.
When I am on the "up side" of a nerve block, I generally feel motivated to keep going with my strengthening exercises, but when the nerve block starts to wear off, and I am in more pain, I start struggling more with feeling depressed and un-motivated. It is especially hard with chronic conditions (such as mine), when there isn't an obvious solution for helping long-term. In those times, I try to remind myself to persevere regardless of how I feel, because I know that keeping up with my exercise program is key to eventual healing.
Thank you for taking the time to research these things!
I will certainly come back to respond to AnnaHU. But now, I am pressed for time and I want to keep energy for what is currently priority in my life and the life of my loved ones, including my Cancer Support Group. I will say one thing now, since my CLL diagnostic, out of the blue in 2014, my emotional health has taken a dive. My native optimism is now practically history, and every world news feels like a personal insult. My HOPE is that I return to a more serene frame of mind, more accepting also. I am 83, but emotionally I regressed to 8 😉 At least that's how it feels often time. Tks for the opportunity to articulate how i feel.
Hi, I tend to suffer from anxiety these days but I don’t know if it is because I am a widow & nearly 83 yrs old or PMR. I have tapered to .50 mg now & am loath to stop taking prednisolone totally as I fear that the anxiety would increase.
I am sorry to hear of your loss - I hope that you have found people to connect with through HealthUnlocked to support you.
thank you. Yes I am coping well & have a lot of support.
To state the obvious, some of our meds seem to do more harm than good. I tried to switch to Anagrelide from HU to reduce the risk of a redo with a year-long ankle ulcer. Unfortunately, the new med came with a lung problem that I'm still being treated for, a brain that runs in low gear most of the time, low O2 levels--the tether tubing is always there--and current platelets of just over 1200. I began HU about six years ago, and, having moved, I've seen 5 different Hematologists, and an uncountable number of dose adjustments, etc., etc. Worse, I've recently experienced my first ever sleepwalk and a black-out--still trying to fill in the details of what caused it and what transpired during the outage. Anyone had same? My guess it was a low O2 level, but near impossible to be sure. Add in the "joys" of being 80+ and I find it's difficult to wake up as Cheerful Charlie knowing every morning it's going to be really difficult to crank the old car and get going....
I can understand how it could be difficult, but that does not take away the fact that you are getting up each day and continuing on despite your struggles. That is very commendable.
In 2013 I had an accident resulting in spinal injury at the base of my neck with paralysis from there down, spasticity (muscle contractions and spasms) and double incontinence. I am housebound and live alone. At least three quarters of what I used to do are now impossible, and the others are difficult. My hands are badly affected. I am typing this with two thumb nails. Together, these conditions have resulted in mood swings. Often I feel depressed especially when waking up in the morning or during the night. I like to write about my experiences before and after my accident and to exchange views and thoughts on health and other issues with correspondents and on social media such as this one.
BarrySimpson - I am so glad that you have been able to find HealthUnlocked and share your story with others. What are the best ways that help you manage your feelings of depression?
Having someone to talk to who is on the same wavelength - friends, some of the nurses and carers - helps. I think of the alternative. Death does not sound much fun. Getting responses to what I write helps too. Thank you Anna.
Two health conditions have kept me isolated these being IBS and arthritis in the feet, having to stay home, for me, started a couple of years before the covid restrictions.
With the IBS there is the fear that I will (which has happened) have accidents and the thought of this has prevented me leaving my home.
I have arthritis in various areas of the body but the area that has had the most impact is arthritis in the feet. It is painful to walk and going any distance is a no go.
A couple of leisure activities I enjoyed were walking, yoga and volunteering on a canal boat which all creased. I also lost my job due to health issues. Along with that my sense of purpose kicked in. Depression and stress kicked in and my world as I knew it became smaller.
I was prescribed medicine for stress and anxiety and when my body became acclimatised to these stronger medication was prescribed.
When this happened I weaned myself off the medication knowing that it would have an impact on my psychological health. I was prepared to take the rough with the smooth.
My current focus is improving gut health and breathing exercise for anxiety. It's not perfect but I would rather have a 'can do' attitude rather than learned helplessness.
I am still socially isolated and still have problems walking but these are issues I am addressing. I am teaching myself to sew and am now looking to do voluntary sewing in a group. This wouldn't be time bound and will reduce social isolation.
Hi Kezz63, understand what you are saying I was like that when I first had pain in my feet. You are right its about finding other ways to lead your life. I tried a mobility scooter but no go. I now walk limited from a knee replacement which has left other problems. its the social isolation that causes most issues as I was active like you. Of course the virus placed many isolations on us too. I do voluntary phone line for Arthritis Action to help people manage such issues. We have a local contact by phone for friends who are isolated or alone too. Zoom groups on line can make you feel less isolated , I have pen pals too. But as yet I have found no substitute to being able to go out. My sister comes around once a month a four hour round trip and we go out for a couple of hours, she has a car not me. A Blind person I know makes cards and sells them for charity. Embroidery is another form of sewing with lovely results. Some people do knitting for varied charities. I used to do jigsaws but my sight is failing now with age so don't bother so much with that pastime. Rollators are quite good for short walks some do turn into seats to rest. Every best wish for your changing life style
Thank you for responding. It is about looking at what you can do as opposed to what you can't.
First of all Dear Anna I thank you for starting this discussion group. You only need to look at the responses so far to see how valuable this research is. However, I am a little surprised at the terms of reference you are using. I know that it is normal practice for our doctors to polarize all experience between mental and physical but surely the rest of us understand that this sort of Dualistic thinking is, in and of it's self, a major problem in the way we think about health.
Thank you for taking the time to respond to this - health is certainly a complex topic and I hope that through this community we can start to unpack these issues and dive deeper into these conversations.
After suffering several work related accidents, unfortunately my mental health has deteriorated significantly. I went from having 2 jobs, a full and part time and a voluntary job to overnight losing everything including my health. People see the face, not the inside. They see the smile and yes I’m fine, but people don’t want to know the truth, that sleep is a hit or miss, that sometimes you can’t keep your head up, that you sometimes you go weeks without seeing other people than your husband son. That you stare at the walls for days on end all you want to do cry. No one wants to know that, they want just the standard thing I’m fine.
Having extensive bronchiectasis from the age of 2, I was brought up in a large family. Bronchiectasis prevented my childhood from most activities, the environment looking back was not conducive to bronchiectasis. The constant chest x rays. Missing school, infections come and go. Now as an Adult 73 years old, through years of coughing the muscular tissue below the rib cage are damaged, hernias prevalent, unable to enjoy most activities. Exhaustion drains you, lack of sleep, waking up coughing. Sleep study shows existence problems and leg movement, lack of rem sleep, drop of O2 levels.
The loss of my driving licence means that I've permanently lost my independence.
My environment housing adding to the health problems, effect my mental health problems, I have had periods of depression not treated by meds, booking blood tests, ordering prescriptions, going to medical appointments not been listened too.
UCHL have made my life bearable, they have a summit study research project, thanks to them spotted a nodule on my right lung.
There are many triggers which affect my asthma, some you are aware of, others no. Best wishes to you fellow suffers.
Anna - what advice would you give to a young man soon to be 34. Who 3 yrs ago had an accident leaving him with a Traumatic Brain Injury. When he when he eventually got home from hospital with his leg in a fixator, at time he had a lot of get up and go. Although at first he couldn’t really talk much but was out walking every day with his dad. He can no longer read due to the frontal lobe damage. As months have gone on, without very little continuity in his care by especially by the NHS, ( with whom I am extremely mad with - I’ve supported the NHS for 43 yrs, as my husband was GP very respected one at that, it was a vocation for him, and he passed that onto our children, two who followed in his footsteps into the NHS, including our 34 yr old son who would still be working for them. If he could.
But for the lack of care and failing to listen to us as parents and our son at the time before his accident. This accident could have been prevented, If he’d been taken seriously, there was signs that all was not well..
Our sons is getting worse, he doesn’t want to go out, he constantly says he doesn’t want to be like this, but has no motivation. This wasn’t what he was like , he has 3 degrees 2 of which are masters, he would have continued to be an amazing phycologist. So heart breaking that his friends don’t contact him.
As a family we are at breaking point to see the way ahead, as you can imagine is extremely difficult. He takes his medication that they prescribed but it is poorly monitored by them .. if this is how the NHS treats one of their own what chance does the public have.
Some days he will engage and other days he just wants to sleep,
I have had palpitations (Ectopics, SVE, SVT, possible AFib), for over 30 years. I have never been able to prove that I have Afib as the monitors I have worn have never caught it. Because I feel I cannot prove it, I worry I may not be diagnosed correctly. Having come over unwell with palps while out, I have become more frightened of going out on my own, and feel almose agrophobic. Having lost my job during Covid has only made this worse. I am struggling with the stress and anxiety of getting back into work as I have lost my confidence. I also have a lot of fatigue and muscle weakness which I have no answer for. I have been to the docs quite a few times but worry that they may think I am just a worrier, when I know that is not the case. I just want to get on with life, but have symptoms that are holding me back. The GPs just don't have the time to listen.
Hi, I was born burning the candle at both ends. In my mid 30's I ended up getting a hysterectomy. In my late 30's I was pain from fibromyalgia. Finally, I ended up getting ME/CFS. I always had depression, it runs in the family, but being trapped in a body that no longer responds the way it ought, has caused serious mental issues.
I get frustrated, anxious, sad, and just generally annoyed. The fact that I can't grasp a mug some days. That I need sleep for 2-3 hours to recover from washing. That I forget words I have just seen written down.
I have had therapy to assist in accepting my health as it is now, yet I find myself still chomping at the bit to do something. Even walking is not viable unless I use my entire reserve of adrenaline, so my mind starts to close in on itself. To fight pain, from the moment you wake up, is exhausting, but to fight my own mind tips the balance into a negative.
Depression or a low mood, based on health, I believe is a given.
Regards,
Ruth
Yes my pysical health which has worm me out gps don't listen consutants doo, as im pysycally unwell gps say I'm thinking my illiness when it's proven im not by tests and letters of findings and findings gps love too make you this ways as they have a fee for mental health
Hi there,my doctor has never sent me for any tubes down my throat or anywhere else,I've had cirrhosis going on for two years but having cirrhosis hasn't made me anxious or depressed but the reverse as I've suffered from extreme anxiety and depression for half my life and have been on so many different pills for it u wouldn't believe and tried things myself that cost me loads of money like hypnotherapy but with my anxiety my breathing gets so bad I gasp for air like a fish out of water and feel like each breath is going to be my last and no amount of pills helped me and that's when I would drink as it was the only thing that seemed to ease my breathing,so for half my life now I really havnt had much of a life and have felt suicidal so many times I've lost count and have come very close to just ending it all many times,with all that said about my miserable existence I'm not drinking and havnt for a long time apparently the last blood test I had wasn't to bad so my doctor said and I'm mainly eating things that are gentle on my liver drinking plenty of fluids and going one day at a time as I do with every other thing I have to cope with,I'm thinking of changing doctors as mine I think is one that just doesn't seem to bother with anything and I have asked if there are any trials that I might be able to get in but I've started trying to find out for myself now as that seems like the only way I might get on one
Just knowing that I have ET Jak2 and having to take hydroxycarbamide every day depresses me very much. I try to forget about it, but it's always in the back of my mind, shorter life, hair thinning, itching, mouth ulcers. This is for the rest of my life.
the search function sent me here when I was looking for advice about the mental confusion I am experiencing after my open heart surgery. I have had an awful morning trying to get some advice about a suspected sternal non-union. I tried the physio, cardiac nurse and GPand spent 20 mins on hold before I just lost it. I had a crying jag and meltdown. I didn't get any help -I had a couple of missed calls from one of those 'do not reply' hospital numbers, and a text from th eGP surgery saying my prescription has been declined because it is 'eRD' - no idea what that means, but now I am worried they will stop my heart medication too.I was going to try and have a self care day, and I did want someone to help me at the hospital next week because I find ENT pretty aggressive - they have already shouted at me because I didn't hear them on the phone ( I am deaf ) and they are worse in person - and this is regarding a nasal tumor and probably not good news either. I'm just so confused.
Having a chronic health problem often goes hand in hand with mental health. Always worried especially when conflicted over choices as to what to do..Indecision creates anxiety and depression. It's very distressing and often keeps me from enjoying life as I should .
Hi, I can appreciate your questions and thoughts, and I’m glad you ask as I find reading others stories helps me to realize I am not alone with this struggle.
My medical issues have changed my life in ways that many do not understand as my illnesses are the hidden kind. I had to learn to accept I could no longer do all of the things I love and honestly, that was one of my hardest valleys. It can make one feel defeated and alone. Once I was able to accept the changes I had to make, I was able to focus on new things that I COULD do. It still isn’t easy though.
I’ve battles major depressive disorder with high anxiety over the past 20 years. There have been times when some new diagnosis makes my mental health plummet, but once I accept and adjust, I do much better. But it is s never ending cycle. At least for me. I am so very thankful for what I am able to do, I am blessed every day to be able to see the positive.
I feel like the new diagnosis or struggles almost being a type of mourning to me. Like I am mourning the person I used to be. Sounds silly, now that I’ve said it, but it is basically true. I have seen many different therapists and psychologists as well as various anti-depressants. Some help, but some make my mental health more of a struggle than help.
Now, not only does my own health struggles affect my mental health, my husband has been diagnosed with, and fighting, stage 4 cancer with metastasis throughout his skeletal system, lymph nodes, and other areas. It makes me push my depression aside to be able to help him with his, which has bit me many times over the past year.
I’m learning to do better at replacing fear with my Faith. I wake up and pray, I go to sleep and pray, and I feel more positive about life in general. That whole thought process of seeing the glass half full now, not half empty.
Hello to you. I was diagnosed as bi-polar a good number of years ago. I suffer with suicidal ideation. Two failed attempts. Not pleas for help. Let down by the alcohol drug combination. After the 2nd attempt I was committed and the NHS entered the picture. I live in Surrey and the NHS Mental Health system is quite limited. It's basically dope you up, repeat prescriptions, and off you go. I'm on ESA so I can't afford private treatment. Then Covid and Lockdown's kicked in and I couldn't get my meds. I had moved address and couldn't get a GP. Social distancing wasn't a problem as I was well qualified for that. On 4th Jan 2023 I developed a bacterial infection and using my brothers address I was able to get an emergency consult with a doctor at his surgery. I cannot sing the praises of the NHS enough. I have had 29 consults and hospital referrals. You name it, I've had it done. X rays, CT scans, PET-CT scans, endoscopy'-both ends😕 End result - so far- is extensive emphysema. I've been a smoker for over 45 years. How could I afford it? I recycled tobacco. Mine or butt's I found on the streets or park benches. I was ashamed at first, but me and my habit soon got over that. I'm on blood pressure meds now and my GP hooked me up with a quit smoking service who took me on board and I've been smoke free now for 23 days. My mental health has improved so much now. I'll have to address it soon enough, but the physical stuff comes first. My motivation was my PET-CT scan specialist showing a picture of my lungs. I won't swear here, but I did when I saw the damage. It's not reversable and the specialist referrals continue. Respitory and cardiologists have been arranged. I have suffered from chronic pain for so long I took it as the norm. But thanks to the NHS and a friend who out of the blue came back into my life I have a new lease on life. Sounds too good to be true? We'll see. Apologies for rabbiting on
Hi Anna I wA diagnosed in 2022 with adult ADHD I had a rare SCAD in 2020 which I survived and I would prove to share awareness of this condition
Love to share
Certainly does
Hello I can categorically say that my pain due to my disabilities definitely has become an issue with my mental health, how can it not?
We all have "mental health", each dealing with many different things. Being disabled & being in constant pain is not too much fun. I can't keep telling my family/friends, they already know & understand, they're more than willing to listen & help, but the pain is still there. I have now become reclusive & I know that this is not the best way to cope.
Hi x. I'm nearly 49 yrs old. In Sept 2020 I was airlifted to King's college hospital London liver icu with septic shock die to 25 abcesses on my liver which some of turned septic. I was not expected to pull threw bit after 6 weeks I woke up and spent a further 4 weeks recovering in the icu and then another 2 on a normal ward. I still suffer greatly with my mh and flashbacks and panic and anxiety. Coming round and having oxygen pumped on my face. I could not breathe and the icing on the cake is I have lost all my teeth other than one in the front and I cannot find a dentist. It is killing me
Hi my physical condition truely effects my mental health. However it is my mental health, stress , anxiety that has caused my breathing issues.
I've researched that early server childhood abuse, causes so many adult health issues, and can shorten the survivors life by 20years.
The fact that I feel abandoned by the doctor's who I can't get to see, there is no mental health out in the UK. They say there is , nope, similar to USA saying there is housing , yet hundreds are dying on the streets.
I firmly believe in my life time this information wont be brought to the public awareness, so we can prevent other vulnerable children never able to reach their full potential. A wasted life is soul destroying.
There are 400x more people that die of childhood trauma related illness than what die from cancer, yet nothing is being done about this issue.
I'm so passionate to try and bring awareness to this, telling my story, my hurdles, challenges, what would of helped. The untold story of hidden childabuse. It's now being called the new pandemic, no it's always been here.
Now rather than except the betrayal and abuse, they bury it and it shortens their lives by 20 years.
I wish I knew where to start bringing awareness to the world outside me. At least before I pass, my abuse would help others.
I challenge anyone to get help for CPTSD in the UK.
Id so appreciate any advice or help to help others .
THANK YOU
J.CASS
Multiple health issues and anxiety
In my 20s and 30s I had asthma and lupus, a gynae problem and op but none of that impacted my mental health too much. In my 50s I looked after my dying partner and was with him when he passed. Since his death I have suffered with anxiety and depression and also new physical illnesses have appeared which are making me terribly anxious. Doctors and specialists just prescribe meds over the phone without seeing me so I can't discuss the treatment and my concerns. I feel very alone.
I had a cerebral infraction in 2016, plus multiple T.I.A’s.I took redundancy on medical grounds in July 2021,since then I have oesophagitis,duodentotis, kidneys working at 30%. Sliding hiatus hernia. Anxiety,stress, depression.I self referred to Platform 1 mental health charity. I have signed up for an allotment 18 months ago. It was in a terrible condition, but I’m slowly getting there. But it’s hard, I have to force myself to go up due to motivation and fatigue
Hi. I only just noticed that this was posted a month ago so I'm probably too late in joining and replying. However, I would like to share that I have had multiple illnesses and 5 year's ago I started to feel very ill, had a lot of test's and scan's, didn't know that a tumour had shown on an Xray until I was ambulanced to hospital with Pneumonia and my Consultant asked me why I hadn't had anything done about my tumour. I told him that I didn't know that I had one. I have written about most of this in my Profile so I won't bore on about it again. I was so calm after the Scan's and Biopsies and everything moved very quickly. I find that my mental state is worse now because I have had bad experiences with Gastroenterologist's and was told that 1 had found a Polyp and a thickening of the Colon which might be a tumour but he did nothing about it. I have 2 fractured vertebrae now and Osteoporosis and was told I had spinal cancer and my Dr. told me that he ' would be with me till the end " and then 5 day's later, not cancer but Osteoporosis. The pain back and front is excruciating and my mental state has been hugely impacted . I am scared a lot of the time because I am so sore and feel so ill and I now have to go for yet another Endoscopy which I hate. I have gone through Endometriosis when I was younger, had 3 major ops ending up with a hysterectomy at age 34. Through all of that I had dog's and walked them for 1 hour in the morning and 1 and a half hour's in the afternoon but now I get sore walking round our garden , can't have a dog and have to spend half of my life in bed. I used to tutor an adult Art Group, looked after parent's, put on Exhibition's and now, aged 70 , life , it seems, has stopped for me. My husband has stuck by me and I wonder why and now think that he would have a happier life without me. What use am I? My friend's and husband try to reasssure me and a lot of the time I try not to moan but the big , black hole beckons ! The medical profession, on the whole, have been pretty horrendous and I was made to feel like a hypochondriac through the Endometriosis, which was severe and before the lung tumour was 'found ' ...again! I feel so awful, moaning on like this but I am in incredible amounts of pain despite Oramorph and Opioid's. I now have a lovely , young Dr. who seems to be thorough. We will see. My Endoscopy is next week and I'm scared even though they sedate me. I was told yesterday that I am anaemic but can't take iron until after the Endoscopy. I am not happy very often now. Walking helped me a lot but I can't walk far now. Thank you for ' listening '! Take care. All the best to all here. Danni x
During my final year of uni (2 weeks before my final exams) I had a seizure whilst I was straightening my hair. I sustained 3rd degree burns to one side of my face. I, of course, missed my exams.
To add insult to injury, my boyfriend at the time broke up with me and I later found out he'd been cheating on me whilst I was in hospital. Top guy, right?
Anyway, after invetigating why I had the seizure, doctors initially diagnosed me with a brain tumour. Oddly enough, I wasn't worried about it. I just assumed I'd be cured by the 6 weeks of radiotherapy I was out forward for. I also had bigger fish to fry - I was bald, scarred, and wearing a plastic mask to flatten the scar on my face.
To find out whether the tumour was cancerous or not, I had to undergo a biopsy. I was waiting to be put under when the surgeon told me he was late because he had been looking at my MRI from the night before. Whatever it was had shrunk and it would be too dangerous to operate. Happy days, right? Wrong.
A few months later, I was diagnosed with MS. People think I am insane when I say I'd prefer the brain tumour. I'd prefer the brain tumour because, in my head, the options are clear cut - cure or death. MS is not clear cut. It's a ticking time bomb that could hit me at any moment in any way possible. What makes it worse is that I'm constantly reminded that I have it due to the scar on my face. Yep, my appearance was permanently altered due to this ticking time bomb.
I am grateful that I've had one of the best 'treatments' out there and it has kept my MS at bay on the whole. I also have a loving boyfriend and my career is going well. My MS and scar, though, make me feel thoroughly inadequate pretty much all the time. I'm damaged goods and the damage is only going to get worse over time.
As a result of the burns I sustained to my face (thanks, MS), I had to wear a plastic mask for 2 years of my life. These were some of the hardest years of my life. Every day of my life for 2 years I was told I was ugly, pointed at, laughed at, asked what I was dressed as. "It's not Halloween love, take your mask off!". This experience led me to hate my appearance. Even now, 7 years after the seizure, I catch sight of myself in a window and recoil at the sight. I guess that's what being called ugly for so long does to you - you internalise and perpetuate it.
I could go on but this is pretty much my experience of mental and physical health. It's pretty bleak, but I force myself to carry on.
With narcolepsy I am confined to home unless I go out with someone as scared falling asleep in the street
OMG my whole life has been changed by my condition, i had to give up my job as a nurse in emergency medicine because I wasn't capable of being on my feet for 12 hours with a half hour break any more and i couldn't do CPR for long enough. That side of things worked out and I couldn't be happier work wise though.
What does bother me is how incapable I am of every day things. My poor partner does all our house work with the exception of i can load the dishwasher as its a table top one. Today we have been cleaning as we are away on holiday tomorrow and have a pet sitter coming, i decided to do the bathroom, i cleaned the sink and had to sit down for half an hour then cleaned the toilet which i couldn't even finish doing and had to get dihydrocodiene and have not moved off the sofa since.
I can't cook on my own, i need him to chop stuff. I can't clean the house. I can't care for our pet rabbits. I can't walk around the supermarket most of the time and if i do manage that then i won't be doing anything the next day. I'm so exhausted all the time so i never want to do anything remotely fun.
If i didn't work from our spare room i probably couldn't work either.
I don't feel depressed as such i feel angry and guilty. Sometimes upset when I can't do the most basic things. I mean I can't even clean a toilet!
I'm so grateful i landed on my feet job wise because really my job is the only thing I have going for me. My job is amazing and people there have supported me and made me feel like i am still good at something.
I did absolutely resonates with me but my long-term health condition has been dealing with addiction over in the course of a number of decades which of course leads to dysfunctional thinking, self loathing, selfishness, and a lack of ability to see the good in me
My first serious depression came when I was in my early 30s after the birth of my first child.I was certain it was hormonal, but kept being told I was too young. Skip 7 years and my own perseverance, I was diagnosed with premature menopause. HRT helped a lot more than antidepressants.
If only I had been listened to in the beginning maybe I wouldn't have suffered such a deep depression.
FF to a few years ago when I was diagnosed with Hashimoto's Hypothyroidism and given standard levothyroxine. Before diagnosis, I wasn't aware of any symptoms, it was just a routine blood test.
My mental and physical health plummeted over the next year, despite many, many visits to GP. GP could do nothing except monitor TSH and dispense higher levothyroxine, which I knew was making me much, much worse.
FF again, and following a stay in hospital due to an attempted suicide, and subsequent refusal to take levothyroxine, and a change in endocrinologist, I was tried on T3. The difference has been remarkable in some ways, but due to inadequate knowledge of Hashimoto's Hypothyroidism the treatment is rigid and not based on symptoms. Also, no interest in vitamin and mineral levels which support the thyroid and recovery.
Everything towards correct treatment of my hashimoto's hypothyroidism has been down to me, due to my poor health, and not being heard. Why do doctors treat women differently to men. Women are hysterical!!!! My husband has had a completely different experience being diagnosed and treated for hypothyroidism. Women cannot possibly know when something is wrong with their body! It's all in their head. The mental health decline occurs because it takes far too long to get the right treatment, far too long to be heard.
Soon after I came out of hospital, my GP said "you have to try to get back to work" . If only!
I replied " don't you understand how incredibly ill I have been and still am." I haven't seen him since. Only by phone.
Doctors are supposed to make you better.
Both of my serious depressive states have been caused by hormones.
Both are predominantly female issues.
Both were treated as "all in my head" which they became due to complacency by medics.
💬 Discussion Topic: How does your background or how you grew up affect how you think about healthcare?💬 Discussion Topic: How do you seek healthcare services?💬 Discussion Topic: what is important to you?💬 Discussion Topic: Insights and Advice for Our Former Selves💬 Discussion Topic: Would you change your habits and/or environment for treatments that reduced your most challenging symptoms?
