The title of this post is perhaps a little misleading; depression is not a symptom of ME/CFS. It is, however, incredibly common for sufferers of chronic illness, especially misunderstood chronic illnesses like ME, to have periods of low mood, or depression as a result of their primary illness, so I wanted to address it all the same.
Understandably this post may not be the cheeriest, but I think it’s important to talk about things that are difficult sometimes. I've spoken before about things I use to stay upbeat, but sometimes that's not enough.
I’m going to talk about my experiences with low mood and depression, and that will include my description of how it feels to me.
If you are suffering yourself and you’d like to skip that part because it’s too difficult, then scroll down to the picture of the puppy, and that’s where I’ll move on to my message to you, and to specific tips adapted for ME sufferers that you may find useful.
I had depression as a teenager, although I didn’t know that’s what it was at the time. Then, for a long time I was never sure if it “counted”, because it was a direct side effect of being on an incredibly strong anti-acne drug called Roaccutane. (I was put on an incredibly high dose at around 13.)
At the time I wasn’t confident enough (or know myself well enough) to be able to tell my doctor that the drug I was on wasn’t working for me: both in terms of my skin (which got considerably worse), and the onset of depression.
Every time we spoke to the doctor they said we just had to wait a bit longer; that it took time for the drug to work.
I was on Roaccutane for 18 long months, and would miss school because of its physical and mental effects fairly frequently. We didn’t tell anyone that I just couldn’t face leaving the house, as we were unsure as to how the school would react.
To those who have never experienced depression, this is what it feels like, at least to me.
It’s an odd sort of numbness that leaves you feeling distant and disassociated with the world - like waking up from a confusing dream and not knowing if you’re still asleep or not, or having a bad fever; nothing feels quite real.
It’s wanting to cry all the time about ridiculous things, and knowing it’s ridiculous but not being able to stop it anyway because you just feel so, so sad.
It’s getting irritable and snappy with people, and then feeling guilty and convinced that they hate you, and that no one really wants to be your friend or talk to you. That you’re all alone.
It’s not being able to see past those feelings. You’ll try, but everything seems a bit… hollow.
It’s trying to find the will to carry on as normal but feeling like you’re walking through treacle, and that caring about things is really difficult.
I’ve heard people describe it as a fog, but I found a passage from my diary at the time where I said I felt like I had rocks tied to my feet, holding me suspended down in a deep, dark lake.
To be frank, I was lucky that during all this I never experienced suicidal thoughts, or a propensity for self harm.
After a year and a half of this, the doctor eventually stopped telling me that I just had to wait longer for it to work, and I stopped taking the tablets. My mood immediately improved, even if my skin did not, and I stopped missing school. I didn’t tell anyone about it for years, mainly because I wanted to forget about it. No one even knew that I was on Roaccutane.
I have a very clear memory of my friend reading about it and warning me not to go onto Roaccutane due to the heightened risk of suicide for those taking it. She was shocked when I told her I’d been on it for over a year. I don’t remember exactly, but it might have been the trigger for me to finally stop taking it.
(I feel at this point I should say that it’s very unlikely a dermatologist would allow this now. It’s a very strong drug and high doses are only meant to be taken for short periods. I think I was on at least 40mg daily for 18 months. I tried Roaccutane again in my 20s under a different dermatologist and it was much more successful. However, I found could tolerate no more than 5mg a day before experiencing low mood. Even then he was reluctant to prescribe it for longer than a year.)
In a way that experience has been useful. I can tell people who think ME is “just” depression that no, I know what that feels like, and ME is completely different. ME makes me want to do things but I can’t, depression makes me stop feeling like I want to do things all together.
It also allowed me to notice when that old numbness has been creeping back, and when I’m crying a bit too often to be put down to being a sensitive soul in a difficult situation.
For the most part I am remarkably upbeat, but there have definitely been times during this illness when I know I need extra support, be it medicinal or therapeutic.
I am on anti-depressants, and have been since I got sick nearly six years ago. At first the doctors thought I was depressed, so they gave me serotonin tablets, and when I convinced them that it wasn’t depression they left me on them saying that the serotonin might help with the ME.
It seems of little consequence if that’s true or not.
I’ve been on them for six years, and the strain of dealing with this condition that long has meant that I do actually need to be on them now.
I’ve slowly lowered the dose down to just under half the original dose, mostly to avoid side effects. It’s a low dose now, although I will consider raising it again during periods of particular difficulty.
Eventually I would like to come off them, but again that’s mostly due to concerns with side effects. (See my post on dealing with pain for what happens if you mix long term anti-depressant use with anti-inflammatories. I do not want to experience that again.)
Low mood and depression with ME is slightly different in that it (usually) comes from a specific trigger, your illness itself. Frustration at not being able to do things, societal shame, grief over the person you once were or those you miss, guilt at the strain you feel your illness puts on others, and fear that things will never change, or if they do, only get worse.
ME/CFS is a harrowing disease, and even the most sunny, happy person would struggle to constantly remain that way whilst dealing with it.
I am incredibly lucky. I have access to medication, therapy, a healthy diet, and a loving support network. It is all too easy to see how someone in my position without those all-important things could lose all hope. Without hope, some see little point in carrying on through the pain.
People with ME are six times more likely to commit suicide than the general populace.
Smol dog says it's time to come back now.
To those who suffer with low mood, depression or suicidal thoughts, please listen.
You are not a burden. I may not know you, but every person has inherent worth, something they bring to the world that no one else can. Even more than that, your pain means that you can recognise and understand another’s pain.
Pain, more often than not, breeds understanding and kindness, and understanding and kindness are exactly what this world needs.
The world is therefore better, because you are in it.
I know this illness takes so much from us, and then depression takes even more, but please don’t let it take everything. Don’t let the bastard take everything.
There is nothing wrong with talking to someone. Anyone. You are not a bother for doing so. There is no shame in seeking help. The mind plays tricks, and just because you think something, doesn’t mean it’s true.
There is nothing wrong with being sick. There is nothing wrong with being frightened, or sad, or angry and frustrated.
You are not alone. There are thousands of us with this illness, and more still with depression. There’s a massive overlap of these groups. They feel the same way you do about themselves. You are never alone, even if it feels like you’re the only one.
You may think there’s no hope, but, as I’ve said before, hope is only gone if you’re not around to have it.
There’s always a chance. And if you (and me) can make it through, then who knows what could happen.
In the mean time, here are some practical tips for sufferers, no matter how low you’re feeling.
Take notice of the seasons
Seasonal Affective Disorder (SAD) is a common problem for everyone, but it may be exacerbated by ME, which often makes you spend more time indoors out of the sun.
If you’re not too light sensitive, you can purchase SAD lamps for a decent price online, which will allow you to spend more time in a brightly lit environment. For light sensitive sufferers, try to find a spot at home that allows you to be near a window if possible.
Even though you’re unable to do anything about the seasons, it can be comforting to know what may have triggered low mood or a depressive episode. After all, seasons change.
Check your Vitamin D levels
As fun as it is to be pale and interesting, if you’re not getting enough sunlight then you need to make sure you’re getting enough vitamin D. This is particularly true of those who are very light sensitive.
Yes, even you, Nosferatu.
You can ask your GP to do a blood test, or, if you prefer, you can order a test online. The online option sends you a prick test that you do at home, and then lets you know the results via email or post.
Lots of people take vitamin D during the winter months, but if you’re housebound then it’s possible you need them year round. I once had one test done in August/September after a summer of laying on the swing in the garden whenever I could and I still had a severe deficiency.
This year I was able to notice a distinct drop in my mood when I was unable to go outside as much as the weather changed. Vitamin D tablets have helped.
It’s best to take vitamin D with some form of vitamin C, as it helps your body absorb it more easily.
The doctor may want to keep an eye to make sure you’re not having too much vitamin D, as that can cause it’s own problems. As long as you follow their instructions and check the levels in your body regularly you should be fine.
The NHS website says 10mcg should be enough for most, and never to take more than 100mcg a day. There's a big margin there, so you'll ned to find what works best for you.
Checking medication for side effects of low mood or depression seems obvious, but it’s easy to forget when you’re in the midst of feeling rubbish, or not feeling anything at all.
Similarly, ME sufferer’s bodies can be very sensitive to any kind of change. If you’ve added something new into your diet, medication, or routine, it can have some very unexpected effects.
One of my food supplements has to very closely monitored. In small doses it’s very useful, but over a certain amount and it makes me very low, very, very quickly. It was actually quite scary, because a reaction to the dose was the closest I’ve come to giving up hope, and yet, as soon as we went back down to a smaller dose I was immediately fine again.
It’s incredibly fortunate that my nutrition advisor had warned me about both die-off reactions, and reactions to increases in supplements, or I never would’ve made the connection and known what to do.
As a result I’d always recommend you add new things slowly and cautiously, and keep an eye on how they effect you. I certainly do now!
Low mood is one of my indicators that I’m tired. If I’m going to get upset then it’s usually at night, once I’ve used up my energy for the day. Rather like a toddler up past their bedtime.
Knowing this I try to keep up with my regular rests throughout the day, and take note of when I’ve clearly worn myself to an emotional frazzle, so I can rest more the next day.
Like the seasonal issues, there’s only so much you can do about being tired, especially when you have ME, but it does help knowing why I feel so pants, and that I’ll probably feel a little less weepy in the morning.
Honestly, same, kid.
Similarly, sleep health is useful to combat low mood and depression. It’s easy to have trouble sleeping when you’re low, or when you’re in pain or having insomnia from your ME. A lot of people with depression want to sleep more, but having ME as well can mess things about even more.
Regulating your circadian rhythms should help with your mood. It’s easier said than done, but it’s another one where regular rests throughout the day should help, especially if you’re resting rather than sleeping during the day.
I haven’t written my post on other tips for sleep health in ME yet, but once that’s completed I’ll link it here.
The main things are to make sure you’re not overstimulated when you go to bed, to maintain a regular bedtime and bedtime routine, to make sure you’re comfortable as possible, and to reduce anxiety over sleep wherever possible, usually with relaxation and meditation methods.
It’s recommended that you try and stick to a good diet to improve your mood. That can be extremely difficult when you have ME, as you have to eat either what is prepared for you, what you yourself can manage to prepare, or what you’re physically able to eat, but if you want to know more about my diet, here is the post on it.
I think the most you can do is to try your best with food, but not beat yourself up if you’re not able to have a brilliant diet all the time. No one’s perfect after all, and you’ve got enough on.
Don't listen to advice that doesn't take your ME into account
It's likely that if you're suffering with low mood or depression, people will recommend you exercise more. Indeed, it seems to be a lot of people's go-to response for most things.
While it might be true exercise releases endorphins, you might find it difficult on account of having a serious physical illness that is made worse by exertion, so you can do this most effectively as an ME sufferer by rolling your eyes.
Maybe not this hard. You might damage yourself.
Seriously though, I don't need to tell you that exercise is healthy, and that doing things that are within your physical capabilities is a good thing to keep your body ticking over, BUT if advice is given to you that makes your ME worse, then you need to listen to your body and explore other options. Maybe that will involve a different medication to one you've been trying, or a different type of vitamin D, or a different diet, but don't suddenly disregard your ME care plans, especially under the pressure of others who may not understand it.
It's possible to take both into account, as this list shows.
Talk to your GP
It’s incredibly important that you talk to your doctor if you have constant or regular episodes of low mood.
I know a lot of sufferers are wary of doctors; especially if it feels like you might be giving water to the idea of your problems being psychological, but the truth is you need support with this, and GPs are the ones who are able to give it to you.
Having low mood with a physical chronic illness is normal, and it does not mean that your primary illness is psychological. Your doctor should be well aware of this, but there’s no harm in pointing it out if you think they’re not hearing you.
Like me, you know what ME feels like, and you know what low moods or depression feels like, and you can tell them they’re not the same thing.
Some people are wary of being diagnosed with depression. Just because you go to the doctor with these issues does not mean you will be formally diagnosed. I haven’t been and I’ve been on anti-depressants at the doctor’s suggestion for years.
GPs are the gateways to medical help in the UK. They can prescribe you medications and they can get you support from counsellors.
There is absolutely nothing wrong with having counselling. Having counselling does not mean your primary illness is psychological; if anything if you have counselling you can prove it’s not, because at the end you’ll still be ill, you just might not feel so crap about it anymore.
I actually had counselling right at the beginning of getting ill. It was one of the reasons I felt so confident in telling my doctors that my ME wasn’t depression.
Having counselling is nothing to be ashamed of. A lot of people get embarrassed about having mental health help, but that’s mostly to do with the stigma around mental health issues themselves. Just as our illness should carry no stigma, neither should mental illnesses. Nobody’s shaming people for having heart disease or a broken leg. If they do, dear reader, they are an arsehole.
Counselling can be scary, but if you find a counsellor you have a good rapport with it can also be incredibly helpful. It’s not easy, but nothing that’s important ever is.
In my opinion, it’s absolutely worth any awkwardness or discomfort you might feel to begin with. It’s very freeing to talk to someone unrelated to the situation and who you can trust.
I regularly speak to two private counsellors, a psychologist and a hypnotherapist. As I’m housebound I have to use counselling services who are happy to operate via Skype, and I couldn’t find a free service in my area.
My psychologist is with the Optimum Health Clinic and suffers with ME herself, although she is much, much better now. I think all of the OHC psychologists have ME. It’s not cheap, but it is very useful to talk to someone who’s been through the same things I’m currently going through.
Hypnotherapy is a very relaxing type of therapy, that allows you to discuss things in a more gentle way. It in no way involves doing anything against your will, and doesn’t leave you quacking like a duck or singing the national anthem whenever anyone says a certain phrase.
It mostly involves imagining yourself on really nice beaches and answering questions because you can’t be bothered not to.
Generally speaking NHS mental health services are in person, although some places do offer phone sessions as long as the first introductory session is done in person.
There’s a tendency among people to only see therapy as an option when things have got “really bad”.
Therapy is not just for those crisis moments, although obviously it’s very useful for those. Depression and low mood, like many things, can wax and wane. That does not mean you don’t suffer from it, and don’t need help.
Therapy is not just a cure, it’s also a preventative measure for future problems. Vaccines work because they give your body the tools it needs to fight infection before the infection takes hold.
Therapy offers a similar opportunity for your mental and emotional wellbeing.
My crisis points have not been as severe as other people’s. I was struggling when I started therapy but I wasn’t in the midst of a severe emotional crisis or a depressive episode. I’ve stayed with my therapists because I wanted it to stay that way.
As with counselling, there is nothing wrong with taking anti-depressants. That’s another leftover from mental illness stigma.
It may take time to find the right medication for you, but they are extremely helpful for lots of people.
You may be on them for a short time, or for a longer one; that’s fine. All that matters is that you’re getting the support you need.
My only warning for anti-depressants is to never come off them abruptly. This is the general advice, but even more important for ME sufferers who are usually more sensitive to changes in medication.
It may be worth reiterating this with your doctor if they (or you) want to change or try stopping your medication.
Talk about doing whatever they’d normally suggest to wean someone off and change the length of time to do it in, by two or four, depending on your general sensitivity.
It’s incredibly easy to isolate yourself without even knowing you’re doing it.
My experience is that it doesn’t so much feel that you’re isolating yourself as much as others are pulling away, or that you’re just can’t do things.
It’s also possible that you think they won’t want to spend time with you. This is one of those times where your depression is playing tricks on you.
The best thing you can do is tell those you love what’s happening. That sounds really scary, but if they don’t know what’s happening then they can’t be there for you.
If it was them, wouldn’t you want to know?
If you’re worried about them treating you differently, you can say that they don’t need to change how they treat you, but that you thought they should know as your friend or loved one.
There's also a whole community online for ME sufferers, and local groups you may be able to find. Many of them will be struggling with the same things you are. I'm trying not to sound like some sort of cult member here but ... join us. We get it.
You do not have to deal with this on your own. Sometimes it’s braver and stronger to ask for help.
Finally, if you ever reach crisis point, and are having suicidal thoughts or ideations, there are people you can speak to who will listen and help.
I’ll leave a list below, and sign off by saying again that you’re not alone with this. We’re all rooting for you. Also, here’s another puppy.
Samaritans - For all
Call: 116 123
CALM (Campaign Against Living Miserably) - For men 15-35
Call: 0800 58 58 58 – 5pm to midnight every day
(Webchat on site.)
Papyrus - for under 35s
Call: 0800 068 41 41 - Monday to Friday 10am to 10pm, weekends 2pm to 10pm, bank holidays 2pm to 5pm
Text: 07786 209697
Childline - for children and under 19s
Call: 0800 1111 (the number won’t appear on your phone bill)
The Silver Line - for older people
Call: 0800 4 70 80 90
NHS First Response Service for mental health crises and support
Call: 111 - option 2
These are hotlines available in the UK. You can also ring mental health charities like Mind in the UK for non-urgent support.
For a full list of international suicide hotlines, go here.