Should there be more mental health support for people dealing with the effects of long term illness?
Hello,
After saying goodbye to blogging a couple of months ago I didn't think I'd be back on here quite so soon, but there's something that I think needs to be spoken about more in society and I think the only way a student like me can raise awareness of things is by writing. Well, until I earn my first million that is ;).
As many are already aware, through writing openly about it on my blog numerous times, that I have a chronic illness called P.O.T.S (Postural Orthostatic Tachycardia Syndrome). It means that when I stand up, the muscles don't constrict in my legs like they should and as a result the blood pools in my feet, causing my heart to race, my body to produce too much adrenaline and the blood not to get up to my brain quickly or efficiently enough. This causes extreme fatigue, memory loss and achiness as well as many other symptoms like temperature regulation problems, digestion problems (as the blood isn't flowing properly to all areas of the body) and dizziness and fainting.
Over the last few months, I have felt - I'm so grateful to report, the best I've ever felt. After trialling a new medication to stop my body producing too much histamine, I feel myself getting stronger. The medication has eased the sickness and fatigue upon waking and has improved areas of my concentration - I can now read books far more easily (before this year I could only manage to concentrate on what was happening in the book for a few pages a day, whereas in the last three weeks I've read four books and I'm on my fifth :D), and it has also made me feel so much better to the point where I can row for 40 minutes every other day. Before this year, to exercise to that extent was just a dream and coming from a sporty family, where people are either playing tennis or at the gym - it was so difficult not being able to swim or row - the two sports I love most. Now, like I say I am on the rowing machine pretty much as soon as I wake and this in turn is physically improving my P.O.T.S as a sport like rowing physically builds leg muscle and greater improves blood flow.
However, as I am told is pretty normal, now I am physically improving - all the emotions that I couldn't feel at my worst stages of P.O.T.S are now seeping in. All the days spent unable to leave the bed with exhaustion, let alone leave the house, were the times when I was too weak to emotionally comprehend what was happening to me.
For years I felt so ill that emotionally I felt numb. That's the only way to describe it. Partly because of the trauma of being a normal 14 year old suddenly waking up one day to find she couldn't move and didn't have the energy to speak, and partly through the sheer exhaustion. I remember for years I didn't get upset at all - to the point where my Mum once sat me down and said "Are you ok? All this has happened and it's as if you're not even there" and although I was replying and putting one foot in front of the other, I don't think I was really. Until you have felt that ill for days and days and days, your body to weak to move, your head so thick you can't think straight, I don't think you can comprehend how much that physical devastation impacts the brain and how it can begin to process it. The illness physically stops you feeling anything emotionally - I remember thinking I should feel scared, or sad or petrified really, but I didn't. Then as I got a little stronger, I got the erge to cry when I felt so exhausted it feels like the bones are sticking through the skin (everything feels so fragile), but I knew I was too tired to cry. I used to want to and had to physically say to myself "no you can't cry, or else you won't be well enough to have your lesson today" that was only 30 minutes long. I was telling the truth, I knew I couldn't cry it'd be too exhausting. Quickly you get used to stopping yourself showing the emotion and maybe this is why it flows now as anger.
Now, when I'm thanking God that I'm in a part of the world where I have access to these new medications, that they know helps some P.O.T.S patients but don't even know why yet, I'm feeling so much anger. Over the last few months I can definitely say I've struggled the most mentally - it's like now my body is strong enough its like "What the heck has happened to me?!?!" and that's honestly what it feels like. Again I think this is so weird, I've lived with this illness for six years now - I'm finally diagnosed (I don't have the awful uncertainty of 'what is this?' running through my head), I'm getting stronger. Yet now it hits me?
But sometimes the body and the world are more complex than I can fathom and I'm told, and from all the articles of grief I've read its normal to feel a mixture of every emotion imaginable. For me anger is the main one, I'm not a physically aggressive person, I mean the sort of anger that sticks in your throat so sometimes all I want to do is scream at everything. At everyone and no one at all. I'm not angry at anyone in particular, no one has upset me; I'm just angry. Other days I question everything. Questions like "why do people have to suffer?" "Have I done anything to mean I deserve this?" "Will POTS ever be stable and not up and down?" "Will I ever get fully better?" the list of questions is almost never ending and I'm aware there isn't answers to most of them. I'm also aware that some things aren't explained, science can tell us why a reaction happens in the body but it can't tell us some people get ill and some don't. For this I feel so grateful for my faith and I pray, hoping that God knows the bigger plan I don't.
Other days I've felt so trapped I have the biggest urge to run and run and not stop taking me as far as my legs can carry me, only to know deep down that no matter where I go I'll still be trapped by the illness and when I get there I'll be more exhausted than before.
Some days I can't stand people. I chat to them and when asked how I am, only understand from their level of perception, they look at me blankly if I say "really tired" if I chose not to lie with the easy "fine thanks, you?" and then they respond "ah I was tired yesterday, what you have to do is go to bed earlier" and that's when you switch off, as you know they'll look at you even more blankly if you reply "I went to bed at eight o clock last night, this exhaustion isn't sleep-tired". A lot of the time I miss being understood and not being looked at blankly. I know you could say people want to understand, they just don't have the ability and I think, "how can I get angry at them for that?" and at the same time I think, but why should I feel the outsider amongst my own kind when the physical symptoms are so hard to deal with without being misunderstood?
Some days it gets to the point where I switch off from people altogether because of this misunderstanding and sit and have a cup of tea with my Mum - who understands the exhaustion better than anyone else - through having an Auto-immune condition that, whilst different, also makes her extremely fatigued, forgetful, and unable to live a fully active life. Yet I don't want to grow cold and mistrusting of people, I think that'd be so easy but I don't want to, I absolutely love people. I believe everyone has the potential for good and that no matter what happens, everyone is good at heart. Sometimes I get angry that I have to feel so resentful, I wish that humans had the inbuilt ability to empathise with things they haven't experienced yet. Maybe, if it was up to me, instead of giving us wings to fly or gills to breathe underwater I'd give us that; limitless empathy, maybe then there wouldn't be as many wars.
Throughout these last few months I've realised it would really benefit me to go for counselling, at a time when I just won't go in there saying "I'm fine" in order to show the optimism that is such a big part of who I am. I want to stress that I love life, it isn't like I'm gloomy and there's no hope, there IS so much hope and this is why I feel so angry on the days I can't live it to the full. Maybe for a long time I didn't feel I could explain how I felt without being misunderstood. I know now this is silly, I think if you need to talk, talk. Its normal to feel angry if you can't live how you used to, I just think it's important to talk to the right person. Someone who can understand even if they have not felt it.
Yet it was in this realisation that I wanted to speak to someone, that upon searching for "charities that deal with the grief of having a long-term illness" I was really shocked. I really struggled to find any that dealt with the grief for the patient and not just the surrounding family. I saw lots of wonderful charities for young people dealing with bereavement after the loss of a family member, I saw some brilliant ones that were aimed at males in particular in a society where sadly males still find it harder to talk about mental health than females, but only one on depression caused by the effects of long term illness. Whilst it was a relief to see at least one acknowledge this problem, it didn't talk of the anger that I can say I feel, with sadness thrown in. It didn't talk of the feelings of being suffocated through your independence being taken away, or the strange feelings of guilt at not understanding what has happened, or the confusion, frustration, the urge to run etc. In fact this particular site wasn't as such a charity, more of a information point and so from what I can see there isn't any charities that help the sufferer come to terms with a long term illness? - If I am wrong please let me know because I'd love to think there is one :).
I only realised that how I feel is normal through the response to past blogs from other chronic illness sufferers, or from speaking to friends whom also have P.O.T.S. In conversation they all said they felt similarly relieved that it wasn't just them "going mad" and that others felt the same. Yet whilst I am grateful to at least have a diagnosis when thousands will be suffering today in the dark, not once did anyone sit me down and say "you will feel angry, devastated, guilt, despair and it could be this year or ten years from now, there is no time limit on how the brain accepts things" and maybe if they did it wouldn't have seemed so scary for a long time to feel this way.
I can say I'm currently on the waiting list to talk to counsellors who seem lovely and that being able to row is helping my feelings of anger and frustration massively. Seeing physical improvement is making me happy beyond words also and since opening up to close friends and family about how I've felt has also helped a great deal. I felt as if I was putting on a front for a long time and by saying "I'm not ok, I feel really sad but I think I will be" showed me that I don't need to be strong all the time - that being sad is never a weakness. But I have written this today as I think more needs to be done.
I don't know how, but I really think there should be more points of access for people with illness, there should be more mental health support available from diagnosis. I am aware of the irony in the fact that because I am still poorly, I don't have the energy to physically change things as yet, and so I sit here humbly writing in aim of raising awareness - if that's all I am able to do. I hope that if nothing else, posting this does and so perhaps until I can have the energy to change things, that someone else might, or even acknowledge a problem.
Thank you as always for reading,
I hope you have a lovely day,
Molly x
After saying goodbye to blogging a couple of months ago I didn't think I'd be back on here quite so soon, but there's something that I think needs to be spoken about more in society and I think the only way a student like me can raise awareness of things is by writing. Well, until I earn my first million that is ;).
As many are already aware, through writing openly about it on my blog numerous times, that I have a chronic illness called P.O.T.S (Postural Orthostatic Tachycardia Syndrome). It means that when I stand up, the muscles don't constrict in my legs like they should and as a result the blood pools in my feet, causing my heart to race, my body to produce too much adrenaline and the blood not to get up to my brain quickly or efficiently enough. This causes extreme fatigue, memory loss and achiness as well as many other symptoms like temperature regulation problems, digestion problems (as the blood isn't flowing properly to all areas of the body) and dizziness and fainting.
Over the last few months, I have felt - I'm so grateful to report, the best I've ever felt. After trialling a new medication to stop my body producing too much histamine, I feel myself getting stronger. The medication has eased the sickness and fatigue upon waking and has improved areas of my concentration - I can now read books far more easily (before this year I could only manage to concentrate on what was happening in the book for a few pages a day, whereas in the last three weeks I've read four books and I'm on my fifth :D), and it has also made me feel so much better to the point where I can row for 40 minutes every other day. Before this year, to exercise to that extent was just a dream and coming from a sporty family, where people are either playing tennis or at the gym - it was so difficult not being able to swim or row - the two sports I love most. Now, like I say I am on the rowing machine pretty much as soon as I wake and this in turn is physically improving my P.O.T.S as a sport like rowing physically builds leg muscle and greater improves blood flow.
However, as I am told is pretty normal, now I am physically improving - all the emotions that I couldn't feel at my worst stages of P.O.T.S are now seeping in. All the days spent unable to leave the bed with exhaustion, let alone leave the house, were the times when I was too weak to emotionally comprehend what was happening to me.
For years I felt so ill that emotionally I felt numb. That's the only way to describe it. Partly because of the trauma of being a normal 14 year old suddenly waking up one day to find she couldn't move and didn't have the energy to speak, and partly through the sheer exhaustion. I remember for years I didn't get upset at all - to the point where my Mum once sat me down and said "Are you ok? All this has happened and it's as if you're not even there" and although I was replying and putting one foot in front of the other, I don't think I was really. Until you have felt that ill for days and days and days, your body to weak to move, your head so thick you can't think straight, I don't think you can comprehend how much that physical devastation impacts the brain and how it can begin to process it. The illness physically stops you feeling anything emotionally - I remember thinking I should feel scared, or sad or petrified really, but I didn't. Then as I got a little stronger, I got the erge to cry when I felt so exhausted it feels like the bones are sticking through the skin (everything feels so fragile), but I knew I was too tired to cry. I used to want to and had to physically say to myself "no you can't cry, or else you won't be well enough to have your lesson today" that was only 30 minutes long. I was telling the truth, I knew I couldn't cry it'd be too exhausting. Quickly you get used to stopping yourself showing the emotion and maybe this is why it flows now as anger.
Now, when I'm thanking God that I'm in a part of the world where I have access to these new medications, that they know helps some P.O.T.S patients but don't even know why yet, I'm feeling so much anger. Over the last few months I can definitely say I've struggled the most mentally - it's like now my body is strong enough its like "What the heck has happened to me?!?!" and that's honestly what it feels like. Again I think this is so weird, I've lived with this illness for six years now - I'm finally diagnosed (I don't have the awful uncertainty of 'what is this?' running through my head), I'm getting stronger. Yet now it hits me?
But sometimes the body and the world are more complex than I can fathom and I'm told, and from all the articles of grief I've read its normal to feel a mixture of every emotion imaginable. For me anger is the main one, I'm not a physically aggressive person, I mean the sort of anger that sticks in your throat so sometimes all I want to do is scream at everything. At everyone and no one at all. I'm not angry at anyone in particular, no one has upset me; I'm just angry. Other days I question everything. Questions like "why do people have to suffer?" "Have I done anything to mean I deserve this?" "Will POTS ever be stable and not up and down?" "Will I ever get fully better?" the list of questions is almost never ending and I'm aware there isn't answers to most of them. I'm also aware that some things aren't explained, science can tell us why a reaction happens in the body but it can't tell us some people get ill and some don't. For this I feel so grateful for my faith and I pray, hoping that God knows the bigger plan I don't.
Other days I've felt so trapped I have the biggest urge to run and run and not stop taking me as far as my legs can carry me, only to know deep down that no matter where I go I'll still be trapped by the illness and when I get there I'll be more exhausted than before.
Some days I can't stand people. I chat to them and when asked how I am, only understand from their level of perception, they look at me blankly if I say "really tired" if I chose not to lie with the easy "fine thanks, you?" and then they respond "ah I was tired yesterday, what you have to do is go to bed earlier" and that's when you switch off, as you know they'll look at you even more blankly if you reply "I went to bed at eight o clock last night, this exhaustion isn't sleep-tired". A lot of the time I miss being understood and not being looked at blankly. I know you could say people want to understand, they just don't have the ability and I think, "how can I get angry at them for that?" and at the same time I think, but why should I feel the outsider amongst my own kind when the physical symptoms are so hard to deal with without being misunderstood?
Some days it gets to the point where I switch off from people altogether because of this misunderstanding and sit and have a cup of tea with my Mum - who understands the exhaustion better than anyone else - through having an Auto-immune condition that, whilst different, also makes her extremely fatigued, forgetful, and unable to live a fully active life. Yet I don't want to grow cold and mistrusting of people, I think that'd be so easy but I don't want to, I absolutely love people. I believe everyone has the potential for good and that no matter what happens, everyone is good at heart. Sometimes I get angry that I have to feel so resentful, I wish that humans had the inbuilt ability to empathise with things they haven't experienced yet. Maybe, if it was up to me, instead of giving us wings to fly or gills to breathe underwater I'd give us that; limitless empathy, maybe then there wouldn't be as many wars.
Throughout these last few months I've realised it would really benefit me to go for counselling, at a time when I just won't go in there saying "I'm fine" in order to show the optimism that is such a big part of who I am. I want to stress that I love life, it isn't like I'm gloomy and there's no hope, there IS so much hope and this is why I feel so angry on the days I can't live it to the full. Maybe for a long time I didn't feel I could explain how I felt without being misunderstood. I know now this is silly, I think if you need to talk, talk. Its normal to feel angry if you can't live how you used to, I just think it's important to talk to the right person. Someone who can understand even if they have not felt it.
Yet it was in this realisation that I wanted to speak to someone, that upon searching for "charities that deal with the grief of having a long-term illness" I was really shocked. I really struggled to find any that dealt with the grief for the patient and not just the surrounding family. I saw lots of wonderful charities for young people dealing with bereavement after the loss of a family member, I saw some brilliant ones that were aimed at males in particular in a society where sadly males still find it harder to talk about mental health than females, but only one on depression caused by the effects of long term illness. Whilst it was a relief to see at least one acknowledge this problem, it didn't talk of the anger that I can say I feel, with sadness thrown in. It didn't talk of the feelings of being suffocated through your independence being taken away, or the strange feelings of guilt at not understanding what has happened, or the confusion, frustration, the urge to run etc. In fact this particular site wasn't as such a charity, more of a information point and so from what I can see there isn't any charities that help the sufferer come to terms with a long term illness? - If I am wrong please let me know because I'd love to think there is one :).
I only realised that how I feel is normal through the response to past blogs from other chronic illness sufferers, or from speaking to friends whom also have P.O.T.S. In conversation they all said they felt similarly relieved that it wasn't just them "going mad" and that others felt the same. Yet whilst I am grateful to at least have a diagnosis when thousands will be suffering today in the dark, not once did anyone sit me down and say "you will feel angry, devastated, guilt, despair and it could be this year or ten years from now, there is no time limit on how the brain accepts things" and maybe if they did it wouldn't have seemed so scary for a long time to feel this way.
I can say I'm currently on the waiting list to talk to counsellors who seem lovely and that being able to row is helping my feelings of anger and frustration massively. Seeing physical improvement is making me happy beyond words also and since opening up to close friends and family about how I've felt has also helped a great deal. I felt as if I was putting on a front for a long time and by saying "I'm not ok, I feel really sad but I think I will be" showed me that I don't need to be strong all the time - that being sad is never a weakness. But I have written this today as I think more needs to be done.
I don't know how, but I really think there should be more points of access for people with illness, there should be more mental health support available from diagnosis. I am aware of the irony in the fact that because I am still poorly, I don't have the energy to physically change things as yet, and so I sit here humbly writing in aim of raising awareness - if that's all I am able to do. I hope that if nothing else, posting this does and so perhaps until I can have the energy to change things, that someone else might, or even acknowledge a problem.
Thank you as always for reading,
I hope you have a lovely day,
Molly x
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