Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

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What does “depressed” look like?

People often say things to me that imply that they can’t quite manage to believe that I have depression. Sometimes they outright say that I don’t have depression or say “But how can you have depression?”. Sometimes people react with shock or suspicion or by immediately assuming that I have very mild depression. More recently, I’ve noticed that when I talk about my depression, people reply as if I’m talking about something that happened in the past. They ask “What was it like?” “How did you cope?” and even “How did you get over it?” instead of “What IS it like?” and “How DO you cope?” and “Do you think you’ll one day get over it?”
I talked to some other people with chronic mental health problems and this weird tense-slip thing turned out to be a common experience.

I have had depression for over a decade. It’s been a major part of my life since childhood and if you think on that a minute you’ll have to realise that almost everyone who knows me in real life has only known me with depression. I’ve been depressed longer than some of my siblings have been alive. And I’m still depressed now. People often find this information hard to process because, well, they’ve got this image of depression in their heads and most of the time I don’t look like that. Depressed people are supposed to, say, cry a lot. Or repeatedly say “Oh I’m so depressed”. Or have visible physical scars or a very public crisis in which either a kind stranger, a good friend or men in white coats have to step in to rescue them from their own self-hatred. I don’t look like that. I look, well, normal.

Sometimes depression looks like me.

Sometimes depression isn’t so much crying and crisis and self-hatred as it is a near-insurmountable inability to motivate myself to do or enjoy anything. Without significant support from other people, I don’t eat or wash or get dressed or go out. I’m not sure exactly what it is I actually do but getting out of bed, going to bed and everything in between are really, really difficult for me to do – not in and of themselves but because I have very little motivation. I literally bribe myself, coax myself and if need be force myself to do these normal every day tasks that are required for Staying Alive.

Sometimes depression involves having difficulty concentrating on things and paying attention. So I find myself really, really wanting to understand what I’m reading, watching or hearing and just.. not doing. Repeatedly.

Sometimes depression isn’t so much not liking myself as it is thinking that I am an amazing, wonderful person… but it ultimately doesn’t matter because I’m never going to achieve much if I can’t even keep myself fed and dressed. I know I’m awesome but I feel unable to do anything much to show it. I feel like I don’t contribute enough to my friendships and relationships. I feel like I neglect my activism and my writing. I wonder why anyone likes me when I could do so, so much more to deserve it.

Sometimes depression looks like avoidance.  I stopped seeing many of my friends a few years ago. I still love them dearly but am terrified of trying to reconnect in case they resent the distance I allowed to grow between us. I love my younger siblings but am scared of being a disappointment as a big brother because I disappear when things get bad and only reappear when I’m fairly sure I won’t somehow mess things up. My inaction causes the very thing I’m frightened of to happen and I sort of understand it but I still can’t find my way past the fear and hurt to reach out to those I love.

Other times, it can look like recklessness. I impulse buy things – usually small cheap items of food or jewellery to make myself feel better. I can afford to right now but I still find myself doing it when I really shouldn’t. They make me feel better for a while but are usually followed by guilt. I feel bad for daring to want to feel good.

Sometimes my depression even looks like success. When I was at my worst with my depression, I rarely cried in public but I did write two novels and hundreds of poems, pass nine GCSEs and four A Levels and share a rich and deep friendship and imaginary world with some wonderful people.

My depression waxes and wanes but it’s never really gone (for a few glorious months once I thought it had and then I had a sudden and unexpected breakdown). It mostly manifests as I’ve written before as unwanted thoughts and even dialogue inside my head telling me that I’m bad and worthless and exhausting me so I can’t always remember that i disagree.

I think I’m actually pretty amazing. My friends and partners and family think so too. I’m struggling right now but I tend not to look like I’m struggling; because most of it goes on inside my head, because I have adequate support to keep me fed and clean and dressed, because I push on and do difficult things like talking to people and leaving the house because I want to be a good friend, a good partner, a good brother.

This is what depression can look like. It can look like a charming, smiling, sociable, intelligent young man with lots of friends and people who love him. It can look exactly like someone “twitter famous”, a well-known and well-liked blogger. It can look exactly like a clean, well-dressed, knowledgeable acquaintance at a party.
Depression can look exactly like someone like me.

Which is to say, depression can look like anyone. It’s not something you can see.

Get well soon!

I keep nearly writing this post. Because people keep telling me to “Get well soon!”. I can tell they mean it kindly and even genuinely wish that I will become well. But the thing is… I won’t. I can’t.

I have fibromyalgia. Fibromyalgia is chronic (which is medical jargon for “long term”) and it is incurable. Almost no one ever diagnosed with fibromyalgia has ever spontaneously ceased to have it (as sometimes happens to people with milder forms of me-cfs which is a related condition). Basically, once you have fibromyalgia, you have it for life. I am going to be ill (and from time to time very ill) for the rest of my life.

I’ve described fibromyalgia here before in quite a bit of detail but forgive me for briefly describing it again here. I am in pain. My muscles and joints hurt all across my body, every concious second. Being touched, even gently, is painful. I take a lot of medicine for the pain but all it can really do is lessen it, soften it – not make it stop. So it’s often not strong or unbearable pain but it’s always there. It is both physically and mentally exhausting to live with constant pain. It leaves my muscles weak and fatigued and as a result I can barely walk unaided.

I will have to take pain relief daily for the rest of my life. I will likely always need mobility aids. I will probably always need other people to help care for me.

I cannot describe this as “wellness”. I am not well. I will never be well again.

I can and do live with that. I’m usually okay or at least at peace with it. I’m happy and I love my life and I cope.

But sometimes someone is well-meaning and kind and wishes me “Get well soon!” and the weight, the heavy, solemn seriousness of being incurably ill, suddenly bears down on me.

***

I wish people “Feel better soon!” because I don’t know what’s going on with them. Maybe you might want to consider adding this phrase to your vocabulary.

Addendum:
Yes, I know there are scientists working on cures. But they’ve been researching for 50 years now without yet working out what fibromyalgia *is* so I’m not holding much hope for a cure to be discovered, trialled, found to work *and* made available on the NHS during my lifetime.

A poem about depression

Trigger warning: depression, mental illness, suicidal ideation

I’ve been living with depression for at least 11 or 12 years now. That’s almost half of my life. And it’s a very long time to have been ill.
Here is a poem I wrote about the two different “phases” of my depression: one in which I actively want to die, the other in which I feel that life is terrible but want to stay alive.

Depressions

Wanting to die was easier
A want can be answered with deliberate denial
No matter whether bravery or masochism,
It was a choice I made
I kept myself alive.

I no longer want to die
But living is harder
Changed from active choice
To something thrust upon me
By outside forces.

Wanting death and pushing it away
Took strength
This feels like weakness
Taking what I have been given
Want it or not.

It’s Not a Priority

I’ve been musing on this post for a few weeks now. Having finally come to the conclusion that I’m not going to stop feeling a) too tired and b) too busy to write it, I’ve decided I may as well write it anyway, tiredness and busyness be damned.

So: I’ve been hearing the same comment, or perhaps more accurately the same type of comment, over and over recently and there seems also to be a particular type of person who will make such a comment. And it’s that kind of comment that is very obviously well-intentioned but still very hurtful but it never really seems appropriate to explain why it is hurtful at the time and besides it has taken me a while to figure out quite why I feel so hurt by it.

The comment is always some variation on “Hopefully you’ll be walking around without that thing soon!” where “that thing” is the walking stick that means I’ve been able to keep some measure of independence over the last year and a half. I then point out that it is incredibly unlikely  that I will ever be able to walk unaided again as standing and walking is so painful and exhausting for me that I cannot do it unaided, my stick is the only means I have of walking at all and my condition is lifelong, there is no known cure and the treatments that currently exist are mainly pain relief and resting. At this point, the person who originally made the comment tries to tell me to “Stop being negative” or that I should “never give up” and tries to give me medical advice despite not being a doctor and only having a surface level understanding of my condition. This is usually either a dramatic increase in exercise (something that could severely worsen my condition), some rather dubious change in my diet or the suggestion that really I’m just depressed and if I stopped thinking negatively I’d have boundless energy and be able to walk unaided and pain-free. Ha, as if – and incidentally, I do also have depression in addition to my fibromyalgia. While the two doubtless must interact, it is certainly not so simple as “Stop being depressed and you’ll be able to walk without a stick again”.

What do all of the people who have made such comments share? Firstly, they see me irregularly but fairly often – less than once a month but more than once a year. Second, they are not themselves disabled or chronically ill (or in the one instance of another person with fibromyalgia doing this, they do not have mobility problems). Third, they see me often enough to feel that they know me and have a relationship with me (as a friend, relation, tutor, porter, provost, regular bus driver, friendly local shop assistant etc) but not actually often enough to see the day to day, week to week effect of my illness and disability on my life. In other words, what all these people share is that they care about me and want the best for me but they are not in a position to know what “the best for Liam” actually is.

It would be sensible for people to accept that the people most likely to know how best to deal with my chronic illness are me, the people who care for me on a daily basis and my doctors. Something makes them forget that and makes them make these comments and I think I know what it is. Fear.
Yes, fear. I think these people who don’t see the days in bed or the regular taking of the three different pain killers, who don’t see me sitting on the floor by the fridge to put my shopping away because going to the shop has left me too tired to stand… I think they find the sight of this young man walking with a stick disconcerting. So disconcerting that they want the stick to go away so they can go back to thinking that everything is okay or that I’m just remarkably tired today and will be fine again tomorrow. The stick makes it obvious to everyone around me that, like it or not, things are not as they used to be, I am disabled and there is no pretending otherwise.

Even if that’s not what is actually going through their heads, it is what their words and actions communicate to me. People who couldn’t (or wouldn’t?) see the problem when I was still holding on to walls and furniture and other people to walk suddenly saw it when I started to use a stick. And they started to repeatedly suggest I stop using it and to become increasingly adamant that I won’t always use it the more I insist that I need it. People started to say that my condition seemed “better” or “worse” based solely on how close to a normal gait I managed whilst walking without considering that perhaps just like them I walk slower when I am tired.

I know I can’t see instead people’s heads and know what they’re thinking or feeling but the message I get over and over from people is: “You should prioritise looking more ‘normal’ and less disabled. We don’t want your disability to be so glaringly obvious and if we can’t make it go away then you should at least do other people the courtesy of making it look like it’s gone away. We don’t want to accept what has happened to you, we don’t want you to be different, we want to go back to being able to pretend nothing is wrong. Our way of walking (unaided) is inherently better than your way of walking and you should aspire to walk like we do because your way is inferior”.

That’s the message I’m getting, even though I know people are really only trying to say “I hope things improve” or “I wish you didn’t have to live with chronic pain”.

Here is my answer (or at least, what I sometimes wish I said instead):

“Walking without a stick is not a priority for me or even really a goal of mine. It’s not really that important to me and I don’t understand why it seems so important to you. I much prefer being able to get around using whatever aids are most suitable – whether that’s a stick, crutches, a rollator, walking frame or wheelchair – to being able to walk unaided because without mobility aids I can’t get very far and would need to spend days in bed recovering. I much prefer being able to get around and see the world but looking unusual and moving in a nonstandard way to being able to look and move more or less like most other people but confined to a tiny area.
Please trust me and my health professionals to make informed and considered decisions about my treatment. Please trust me to make informed and careful decisions about my mobility and care needs and accept that my priorities may be different from yours. This is my life, my health and my disability – trust me to manage it myself and ask for help or advice if I need it.
I don’t consider using aids and adaptations or finding new ways to do things to do every day things to be “negative thinking” or “giving up” – for me it’s just realistic to modify the way I do things to make them easier, less painful or less tiring for how my body works now. Continuing to try to do things the way I used to will only hurt and frustrate me whilst allowing others to pretend nothing is wrong.
I don’t care if how I do things like walking or carrying things or putting on a coat looks weird, I just care about achieving what I’m trying to achieve with the least pain and energy expenditure possible. Worrying about how odd it looks would only make these things more tiring. And besides, variety is awesome.
My way of walking (and dressing and eating and talking and being…) is not inherently inferior to yours and trying to make myself look more like you, trying to assimilate into a non-disabled people’s culture, really wouldn’t do me any favours. Just like you, I’m just going about my life trying to survive and to live and be as awesome as I can be – I can live without the pressure to conform as well.
My body has changed and I have adapted to it. There’s no sense trying to force it to change back by acting like the change never occurred. My body doesn’t work like other people’s bodies, there’s no point pushing it to measure up to rules and ideals that were never designed to accommodate it. I can only work with what I have and I have a body that needs a bit of extra help to walk, a body that needs rest, a body that needs pain relief – a body that needs me to find ways to work with it not against it. I have a body that, despite everything, I love and care for and who would subject that which they loved and cared for to standards it would be bound to fail?

Walking without a stick is not a priority for me. Maybe one day I’ll do it, maybe one day I’ll need a wheelchair, maybe I’ll always use a stick. None of these is inherently a “better” outcome as far as I’m concerned – as long as I can get to places and live my life I don’t really care how I move. It’s just not a priority.”

Note: This is about how I personally feel not about how “disabled people” feel or should feel. If you feel differently about your own mobility problems, that’s okay!
Further note: Yes, I still go through periods of grief and upset over my inability to walk unaided. I cannot always manage to feel okay about what has happened to me and frankly it would be weird if I was able to easily accept this. HOWEVER I do have to accept that I have mobility difficulties now, that they are unlikely to go away and that I need to find ways to get on with my life in the body G-d has given me cos no one’s going to bless me with another one.

My Depression

Content warning: frank discussion of symptoms of depression, including involuntary thoughts and suicidal ideation.

My depression is worse than I’m used to it being and that’s eaten a few planned blog posts. Some of them are sitting half finished in drafts, others are still inside my head struggling to be born into words.

I know that if I don’t post here somewhat regularly, I’ll end up not posting at all – and i don’t want that. I love blogging and I love the way it helps me feel connected to so many other people. I want to keep doing this.

So:
Here’s a blog post looking my depression right in the face and describing it. I’ll tell you what it’s like and what it does and then I’ll press “Publish Post” and I will not just have a finished blog post, I’ll have stuck two metaphorical fingers up at the illness that wants me to stop blogging.

Depression for me is when my involuntary thoughts become more than just a murmur in the back of my head and become so loud that I can and do confuse them for my own thoughts. I have involuntary thoughts of suicide, of death, of harming myself and of destroying things – pretty much all the time. Most people get those from time to time and it doesn’t mean they actually want to do any of those things. When my depression gets bad, those thoughts seem to occupy so much of my mind that there doesn’t seem to be room left for normal thoughts about “What’s for dinner?” nevermind room for rebuttals like “Actually, I quite like myself and my life thanks” or “No, punching myself in the face will not help”.
And my depression is greedy – it feeds off things happening in my life like benefits claims and being far away from my siblings and makes them about how rubbish I am as a person. It feeds off my anxieties and insecurities. It plays tag with my eating disorder, PTSD and my chronic illness by giving me thoughts of things that trigger me, by exhausting me further, by telling me I am weak for being in so much pain. My depression hates me and it wants me to hate me too. It is the ultimate bully but unlike real bullies this one knows me almost as well as I do and goes home when I go home.
My depression knows all my secrets and wants me to be ashamed of them. My depression knows I can’t fight it on my own but tells me my friends are better off without me. My depression knows I miss my siblings but tells me nothing in my life could interest them because all i do all day is be ill and try to survive and how boring and pathetic is that? I pick up the phone and put it down again. I open and close the facebook chat box again and again.

If it were just the thoughts, maybe I could cope. For a long while, I did. But the thoughts bring up emotions and memories, cruel words that were spoken years ago to a very different, very scared little boy. Those emotions take their toll and they spill out of my eyes as tears and course through my limbs as pain. When I’m talking to people, those emotions blend with what they’re saying to me and my depression suggests things for me to say. It’s fond of “Fuck off!” and “Leave me alone!” and “You don’t love me” and I take a deep breath and say what I want to say instead. Then my depression tells me I’m awful for even thinking of saying such hurtful things to my friends. How ungrateful. How selfish. Or tells me I’m manipulative for not saying “what I really think”. I think my depression is the one who’s being manipulative here.

I struggle. Because the problems my depression is feeding off are real: I am ill, I am distant from my siblings, I am applying for disability benefits, I am signed off my course… But the solutions it offers me – run away, hide, die, shout and scream, give up, cry until I sleep, eat, stop eating, beat myself up – those won’t help me.

I’m getting the help and support I need. I sought advice about all the problems and I’m going to fix them, one by one. I will live through this version of hell my head has made for me, just like I lived through the ones I’ve had before. Gender dysphoria couldn’t beat me, PTSD hasn’t beat me, panic attacks didn’t beat me. Depression isn’t going to either.

More than that, I’m going to be amazing. Because I don’t hate myself, not always, not really. Because I’m a wonderful person and nothing could ever make me deserve to be mentally ill but here I am and I will make the best of it.

Watch out world, because depressed or not I am here and I’m not fucking going anywhere. I’m staying and one way or another I’m going to make the world a better place. Just you watch.

And i know my old friend depression will come along for the ride but that’s never going to stop me.