The relationship between chronic illness and mental health
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!
Replies
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
"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"
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.
Take care x
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
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.
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