The relationship between chronic illness and mental health

SakaraDee

Hi, I'm Sakara and I'm 17 years old. I'm chronically ill and am a part time wheelchair user as my chair gives me the freedom to leave my home. I have a blog which I -very imaginatively- named after myself as it can cover anything that is on my mind from vintage fashion to attitudes towards invisible illnesses!

So many factors of disability and chronic illness can have a devastating impact on a person’s mental health: isolation, loss of ability, lack of understanding, traumatic experiences, losing friends and becoming distant from family, the list goes on… I would be worried if someone threw all this and more at you and you didn’t have a second's wobble.

As someone with an invisible illness, I would often worry that every new physical symptom of my chronic illness would be put down to my mental health. I’d fear that every heart palpitation, day in bed or complaint would automatically become an issue of the mind. I’ve experienced people not believing my illnesses are real, and people trying to treat my physical illness solely with therapy designed to help mental health. For me, having parts of my physical health blamed on my mental health made it feel like a constant battle to have my physical pain recognised for what it is.

After experiencing new symptoms of falling to the ground with no warning along with heart palpitations, I had ECGs and an ‘echocardiogram’ which showed everything was “fine”, followed by “It's probably panic attacks”.

In my situation, it’s not only physical health that suffers with responses like these. The whole experience left me worried and confused, with the impression that my symptoms were ‘my fault’.

Further tests which aren’t available on the NHS have since revealed that there was a physical cause for my heart palpitations. Before going through these tests, mental health was used as an excuse for my symptoms. Even though I've been told I have panic attacks and ‘generalised anxiety’ I’ve received no treatment for them. My mental health was blamed for my physical symptoms and then I was left to deal with the further impact that had on the whole of my health alone. This lack of support has made me even more reluctant to seek help when I am struggling with my mental health.

Mental health should never be used as an excuse when doctors don’t understand the physical cause of symptoms, and no patient should be left feeling that it’s their “fault” as I did (whether the problem is mental or physical).

Doctors need to be open to accepting things they don’t fully understand as well as working together rather than focusing on their speciality and excluding other factors- like the fact that heart palpitations are a symptom of a physical condition I am already diagnosed with. No diagnosis is often better than an incorrect one as it won’t lead to possibly harmful treatments and encourages further investigation.

Attitudes towards health problems and disabilities in general also need to change to the point where no one is made to take the ‘blame’ for symptoms of physical or mental health problems that are not their fault.

Struggling with your mental health should never invalidate your physical health problem. If you’ve had similar experiences, I’d be really interested to hear them in the comments below!

AnneW

I was told for over 5yrs that my delibitating pain was 'all in my head' and it was only after being sent to the wrong place in a hospital I was diagnosed with Fibromyalgia. That was 20yrs ago.  Thankfully most GP's have gotten wiser to Fibro but even after all this time, I am still hitting brick walls when I get new symptoms I don't think are connected. I feel it's important to remember that GPs are simply people doing a job and some are better at it than others. I'm currently having to literally fight to get an under active thyroid diagnosed and liken most GPs now to NHS drones.. forced into that position by dwindling resources. I recently revealed to my GP that I was having suicidal thoughts and he increased my mirtazapine dose and gave me a self referral note to mental health team. That's about all he was prepared to do. Get a caring GP & that might have been different. This is the service we have, like it or not. It's the pain that's the issue, my mental health is responding accordingly. End of life to end the pain, as from where I sit, that appears to be the only real solution. We have to find other ways to survive and it is a matter of survival for people in my position, believe me. I believe I am one of the mentally strongest people I know as I choose to live every day with pain. I wonder sometimes where society gets off labelling me disabled with the inner strength it takes for me to even carry on.

mossycow

Thanks for your post, yeah the greater awareness of mental health and its problems is getting better but.... There is a tenancy to go to these first rather than more physical problems.

I'm still a bit... Incomplete in terms of a diagnosis... I loathe it when people ask "what's wrong" with me.. Mainly because it's usually the least interesting possible choice of conversation topic at that point but also because it is not a fully formed answer.... Or short either.... And often when I say 'nerves' they assume I'm highly strung. 

Yeah, it's a problem well highlighted, nice one

Waylay

Tried to write about it, but words not coming today. Have been doing a lot of reading on this, and this explains it pretty well. https://stoningdemons.wordpress.com/2014/09/17/complex-ptsd-and-chronic-illness/

feir

AnneW said:

 and gave me a self referral note to mental health team.

Hi. My GP did the same, i actually got the treatment i wanted this time because i was able to self refer and choose what i wanted myself. I know it's hard to reach out when mentally low though, it took me months to first phone them but they don't mind how long you take and don't say it's too late or anything.

Did the same thing with therapy, went somewhere i could get 10 weeks of 1 on 1 therapy, it took me months to decide who i wanted to talk to but they didn't mind as i got 6 months to decide that.

For now i'm concentrating on my physical self and just giving my mental stuff a break but i will be phoning them again when i'm ready to deal with my mental health issues that aren't related to being in chronic pain and losing my independence. They did help with my mental health surrounding being in pain, i was suicidal also from being in pain. The woman was at first not sure how to help me, and i wasn't sure how she could either, but after a few sessions we an idea of what help i needed and she gave it to me. So i wouldn't completely discount that help and maybe give it a try?

Wish i could self refer for all my physical issues as well. Might have not wasted so many trips to the GP to get painkillers that didn't help.

Markmywords

I was in hospital earlier this year with a triple infection (viral, bacterial and fungal.)

I was kept in an isolation room with no view out or even a TV. I told a doctor it was getting me down and the next thing I knew, a psychiatrist was writing me up for antidepressants!

Sometimes depression due to circumstances is the appropriate response to a situation. It doesn't make it a disease!

Turning people into into unfeeling zombies with chemicals is not the solution. If there is a root cause then that should be fixed or at least come to terms with.

It can often be blamed when the doc doesn't have an answer and doesn't want to investigate it further, just as @SakaraDee says.

I don't drink or smoke but the things that are blamed on them without any testing backing it up is frightening.

cajunman

AnneW said:

I was told for over 5yrs that my delibitating pain was 'all in my head' and it was only after being sent to the wrong place in a hospital I was diagnosed with Fibromyalgia. That was 20yrs ago.  Thankfully most GP's have gotten wiser to Fibro but even after all this time, I am still hitting brick walls when I get new symptoms I don't think are connected. I feel it's important to remember that GPs are simply people doing a job and some are better at it than others. I'm currently having to literally fight to get an under active thyroid diagnosed and liken most GPs now to NHS drones.. forced into that position by dwindling resources. I recently revealed to my GP that I was having suicidal thoughts and he increased my mirtazapine dose and gave me a self referral note to mental health team. That's about all he was prepared to do. Get a caring GP & that might have been different. This is the service we have, like it or not. It's the pain that's the issue, my mental health is responding accordingly. End of life to end the pain, as from where I sit, that appears to be the only real solution. We have to find other ways to survive and it is a matter of survival for people in my position, believe me. I believe I am one of the mentally strongest people I know as I choose to live every day with pain. I wonder sometimes where society gets off labelling me disabled with the inner strength it takes for me to even carry on.

cajunman

yep  only people in a similar predicament will truly understand ,  had fibro all my life, mid fifties now,  took 20 years before i myself diagnosed it , then was confirmed via nhs,  unable to talk about my experiences as its to tragic and people wouldnt believe it was all fact ,  no longer registered with the nhs for numerous reasons ,   we are via fibro shaping us indeed incredibly mentally resilient ,  despite having wobbles and feeling very vulnerable .
Take care x

elsabell

Sakira I am so sorry your going through this at such a young age I can so relate to your post although I'm 48 .I've been diagnosed with me ,fibro suffer from depression and anxiety that's four years ago and like yourself I have to use a wheelchair at times . Before I suffered from me and fibro I dealt with my anxiety and depression by absorbing myself in work and for most times that worked I no longer have that option .I believe people who live with chronic illness and pain will most always have anxiety and depression and I'm now learning feeling anxious is normal anyone going through what you are is going to feel anxious and you are so brave .I don't believe anxiety can be cured but we need help to develope the tools to control it and you can do it, I see a psychologist this is my second go and I think its helping a bit I haven't took just as many panic attacks and I'm understanding my depression more . Nobody with an invisible illness should be made to feel like there's no help out there with the medical profession and we often do my gp has tried to do there best but at times they just don't know what to do for me x

Topkitten

I too have had many problems, often being dumped into either a MH category or an incorrect physical issue category due to nothing other than laziness on the part of whomever I am talking to.

I suffer Chronic Pain for a very unique and progressive spinal collapse in my lower spine and from a cervical rupture but I also have high BP most likely caused by a circulation issue in my legs. Ofc all my problems vary depending on my activity or lack of it so the symptoms aren't always available to be seen. I have had many doctors misdiagnose me as having crumbling spine and many more not understand how different my body is in it's handling and ongoing usage of opiate pain killers. If they would only read my notes most of it could be avoided. I even had a massive row in A&E with an old doctor shouting at me and calling me a liar because I complained that he tried to pass me off with a Cocodamol tablet and an Ibuprofen when over the maximum Tramadol dosage wasn't anything like sufficient to control the pain. All that did was get me bad treatment from every health professional in A&E and I got sent home and this led to one of my earliest real overdoses.

My condition was first spotted on an MRI on 2004. However, this only showed part of it. The surgery that followed cured (mostly) the smaller part of the problem and only further investigation and another, more expansive MRI showed the rest. None of the damage is visible nor does it give me the same pain that crumbling spine gives but doctors will not read so many years notes to understand and some won't listen to my accurate explanations. I have been accused of making it up by doctors as well as ordinary people and I too was told "It's all in your head". Many times I have been told, even by doctors, that "You don't know what you are talking about". When I have ongoing problems with the health services it always stems from some idiot refusing to believe me or not reading notes or simply not bothering. It has taken me a couple of months, repeated calls to 111, a couple of ambulances and 5 or 6 discussions with GP's to get a new problem (which I believe to be circulation related) even looked into and all they are doing so far is to arrange an X-ray. All because it is in the same leg that I get constant neural pain from permanently damaged nerves. I have been told it's just neural, that it's my anxiety and depression and that it's not really there at all. Even though I can accurately describe the different types of pain I suffer and how they respond to the various pain killers I take. I have even suggested what I suspect but ofc, I don't know what I'm talking about.

Even speaking to MH people doesn't help because they blame all my MH issues on lack of physical support. I presume that if I actually did get the correct help and support my severe depression, agoraphobia, anxiety, panic attacks and paranoia would ALL magically disappear, lol!

TK

littleruthie123

That's awful top kitten. Its really is I feel do sorry that mental health have let you down .I've problems with mental health since u was young  I too woukd be fobbed off alot .the last 3 years discovering I had breast cancer has effected it alot and after waiting and being persistent .I'm finally being agknowledge with similar p.t.s.d; agraphobia etc .I will be starting therapy soon. I feel resentful I've had too wait 30 years. How my life could of been different .tookieren a while after breast cancer treatment that one do now have some pysical disabilitys .it should not be this hard ..people are loosing there lives everyday as therequested is such low support 

littleruthie123

I'm a strong believer in our power too no our own bodies !!.we no when something isent right. 

Waylay

@elsabell Me too. My depression/anxiety resulted in 6 months-a year off every so often, but otherwise I worked incredibly hard, did a lot of exercise (at one point, cycling to work, weight lifting 3 x per week, hot yoga 2 x per week, sparring on the weekends), and managed to keep my depression and anxiety... livable, most of the time. I wasn't OK, but I was functional. When I hurt my back and ended up with chronic pain, all that ended. No work, no exercise. Depression and anxiety came roaring to the foreground. Still haven't figured out how to deal.

littleruthie123

Me too exercise is a great tool for depression. Miss it alot and like you finding  hard too replace now 

NCL

Thank you for the post - it's really helpful to know about your experiences with medics, and how you've handled it. I have been in pain since childhood (I didn't realise that was unusual for a long time), and it has got worse over the course of my life. I am now in my fifties, having struggled a lot to keep going (you know - to walk, sleep, carry, go to the loo, losing friends and reputation for "being unreliable" because I can't keep going, getting isolated, losing my job, being bored at having to stop doing so many things I love, taking endless medicines and having lots of expensive physio...) I have seen several good medical practitioners who've accepted and not dismissed me even though they couldn't figure out what was happening. But too many medics've told me "there's nothing wrong with you". One spinal surgeon gave me a physical examination that left me unable to walk - he jointed me like a chicken. 
This year, after 20 years of incapacitating chronic pain, I've finally got a diagnosis. I've had one hip replaced, the other will be done soon, the spinal deformities won't go but I'm hoping things will ease when I stop managing the hip pain, putting pressure on other parts of my body. I'm a part-time wheelchair user now, and I have good and bad days. I am very socially isolated but I'm beginning to feel stronger in myself. I have found it overwhelming to be told that the pain was not real. I did try so hard to believe they were right, and that trashed my mental health in addition to the physical pain! So I'm reassessing my self image at the moment - zero to hero. Those who've made judgements about how pathetic/fey I am were wrong. 

Waylay

Funnily enough, it was my mental health practitioners who told me that my chronic pain is in my head. They believed that it's all a somatoform disorder. My pain clinic consultant was furious, as I was beginning to doubt myself and wonder whether I was just being lazy and making up the pain so I could retreat from the world. He wrote a letter to each of my MH practitioners, included 3 MRIs (before injury, after injury but before surgery, after surgery) and pointed out the differences in my spine. He was awesome - I didn't ask him to do it. One of my MH practitioners still persists in the somatoform theory, and I finally stopped going to her therapy group because of it. She also kept talking about my "addiction" to opioids (I've never been addicted; dependent on occasion, yes. When I notice dependency starting it I just stop taking them for a while owowow until the withdrawal symptoms stop). The other two MH practitioners have finally seen the light and apologised.

Topkitten

I often get the "addiction" term thrown at me. I only want more because my body gets used to them, they become less effective and then my addiction makes me ask for more.... or so they say. However, GP's constantly say they cannot see my MRI's which show, over the years, the degeneration within the spine and how it is accelerating. I did ask a consultant why this was and he said they can see them. I therefore assume that there is a cost involved in being able to see them and surgeries will not pay for it as it is not usually required for most patients.

As my condition progresses the pain rises, the neural damage grows and the need for pain killers rises. This is not my body "getting used" to medication it is a rising need. I have problems with almost all the neural pain killers so I therefore need more cover from opiates which, unfortunately, are not very effective.

Now I am supposed to swallow 8 Paracetamol and 3 Ibruprofen each day, none of which do very much plus 2 Omeprazol to protect my stomach lining from them and all they do is remove headaches. I am supposed to take 5 neural pain killers (2 Pregabalin and 3 Nortryptylene) only 2 of which rally do anything and a further 8 Tramadol (ineffective opiates) to help. All of these bar the neural pain killers could be much better covered by increasing the Fentanyl patches but, because I am at the recommended limit set by healthy people, they refuse to do so and refuse to even work with me to see if the recommendation is correct or not. This all adds up to 26 tablets in addition to 3 patches and all it would let me do is barely walk, not enough to actually look after myself when, while the patches were being increased, I could still be able to walk, drive and go out places. Consequently I don't take most of them and am little worse off. I find it difficult to swallow tablets when I know they are pointless and when I can control the pain much better by inactivity. The biggest problem I then end up with is that mentally I have given up and only want the torture to be over and done with.

Being so useless now is letting my mind give up and ALL of my MH issues are considerably worse plus I have new ones. I suffer Severe Depression, Agoraphobia, Anxiety, Panic Attacks and I also have gone from Suicidal Tendencies to constant Suicidal Thoughts and Paranoia now tells me that whatever people say to me is just a lie to get me to do what they want me to do and not what I should do. I have always been OCD anyway and that severely complicates how I deal with things. I don't hear voices or see people yet but I am beginning to believe that the long, complex and extremely detailed dreams and nightmares I get that I thought were caused by the opiates and Pregabalin may be reality and what I think is real is really just a nightmare as surely no one would be treated this way except in a nightmare. The other possibility is that the coma I went into a couple of years ago is still ongoing and I never really came out of it and I am just dreaming while still under.

Can reality really be this cruel?

TK