Why it’s ok to feel depressed after a chronic illness and why it doesn’t make you a bad person, just a normal one.

23^rd March 2018

If you’re reading this and you have a chronic illness, firstly I want to say, you’re really strong. This is not only through the sheer symptoms that having an illness can encapsulate, but also the unnecessary evil of the ignorance that surrounds it. I want to say that this won’t always be the case, no matter how fed up you are of being misunderstood. For me for example, my Nana has my chronic illness and my Mum also has an autoimmune condition, yet I am the only female to be properly treated for Postural Orthostatic Tachycardia Syndrome – how scary is that in 2019? Still, it shows the best thing it can. Progress.

What I also want to say is this. Everything you may feel as a result of what you’ve been through doesn’t mean you’re a bad person, providing you don’t channel those feelings into negativity towards others. The nature of having a condition that perhaps has taken a long time to diagnose, and along the way perhaps has been misdiagnosed, is that sometimes it’s scary to be seen as sad, or angry, or even too quiet. These emotions may in turn enable people to label you with a mental illness rather than a physical one. Of course then, if you are mislabelled, how will you get the right treatment?

What I want to say is its normal to push the feelings of grief, of powerlessness, of vulnerability down at the very beginning as you seek the right medical help. It’s also ok to then keep those feelings closed off for a long time whilst you just try and function to save energy for the things you really want to enjoy.

As is inevitable, it is ok for this to make you depressed six weeks, six months or even six years down the line. Sometimes when you’ve lost a lot in all areas of your life it takes a long time to accept this loss.

This depression might not be in the generic way one may think of it presenting itself – you may like me strive to get up every day and live life to its fullest, try and attend every social occasion under the sun and not hold any feelings of wanting to harm yourself in the slightest. The reality is you want to do everything you possibly can and in turn because you can’t it’s very normal to find yourself extremely sad, or even depressed. Who wants to feel ill?

During my diagnosis of Postural Orthostatic Tachycardia Syndrome I was trying to balance understanding that my body was broken in some way, attending so many medical appointments that hospitals became commonplace, whilst at the same time trying to study for GCSE’s at home. I had no time to grieve. If I did I certainly did not have the energy.

I had two choices: cry and miss my lesson for that day as I was too tired, or push it to the back of my head. If this sounds abominable, to not even be able to have the choice to show my emotions, that’s because it was. I know though that there’ll be so many of you reading this that did exactly the same in order to cope, and I want to say that I’m so sorry it was so hard.

This reluctance to face up to what had happened to me only continued into the next treadmill of education. A-Levels. Taking even more of my sort-after energy meant that crying wasn’t an option; not when I was so exhausted I had a pretty much non-existent short term memory, not when I had six consecutive chest infections in the space of six months. I had to continue... To what I didn’t really know.

In my head, I thought it was University but it hadn’t occurred to me that even when I got there, I would have to accept what had happened to me at some point. It was like there was a corner of my head too dark, too painful, to open. So, it stayed there and it stayed there for as long as it could.

During this time I can remember feeling completely numb, I wasn’t letting in the hard emotions and this meant I wasn’t really able to access the good emotions either. You can’t just have the happy emotions and not the sad ones when something happens to you. It doesn’t work like that.

This was the way it was until the turning point came after two years of A Levels. Consecutive infections meant that my body was too weak to manage three A Levels in one year, so I took two and did the third the year after. In this time I visited friends much younger than me starting University and started seeing friends my age leaving it.  It was during a visit to one particular friend, in which I asked a popular University if it could be an option that I studied part time. Their response, irrelevant of the fact I had the grades they required to make the cut, was a firm ‘no’.

Now, it seems strange to think that going to a place of higher education was my ‘be all and end all’ but you have to remember that through all the sadness, I had to have something to strive to. If not I think I would’ve been very seriously mentally ill.  You have to believe in something even if it’s hope itself. For me, this belief was cemented in the idea of going to University, a belief that probably stemmed back from fourteen year-old me thinking that by the time I had enough qualifications to get there, maybe everything would be ok again. Maybe my life didn’t have to change.

Of course, the whole point of life is that it changes, that we have no control – but this concept was too scary to accept.

The turning point came though and when it did, boy was it intense. The anger felt like literal fire in my stomach. I wasn’t angry at anyone in particular, but everything; the injustice of it all. It didn’t matter that nothing is resolved through anger. It is an emotion from a result we can’t change, but it is a feeling all the same and I felt it. I never had a “smashing the house up phase” or even any physical outlet at all, I just wrote pages and pages of how I felt, played really loud music and had the most amazing rock in the form of my mum who was so patient with my snappiness to the point where I was literally shouting “It’s not you! You’ve done nothing wrong!” in despair. It was awful.

After that was sadness. Of the kind that is only felt in pure loss I think. It’s not a “I feel so down I don’t want to do much” it’s a really intense pain in the middle of your chest that makes you feel like you can’t breathe. A sadness that actually hurts, that is almost physical and all encompassing. It’s the kind of sadness of knowing something won’t be the same again and it would be a sadness that came and went like a tide.

 I was fine until I saw someone that looked a bit like me perhaps walking out of school with her friends, laughing at someone’s rubbish joke – someone who had no idea about medication, hospitals or illness. Or until I saw people on nights out laughing, drinking, dancing without any exhaustion or malaise. Or when my friends were all staying up, staying out and I was getting a lift back falling asleep in the car. Or every time someone mentioned all the amazing people they’re meeting since moving away when you wish with every part of you that you could do the same and not rely on others. And, every day you faced this, whether it was once or twice or five times and every time the sheer pain would feel like you were drowning.

 I felt this bad for about two and a half years and angry for a year or so before that and it was exhausting.

I kept telling myself it had to get better, but it seemed to get worse. Part of me thought that this was just how it was going to be now, with my illness. I knew this was bleak, that on top of everything else I couldn’t stand the guilt I felt being envious but maybe this was another thing I had to endure. This guilt makes all the feelings 20x harder and what makes it harder still is that many people my age haven’t been through the same thing and can’t relate.

The main reason for me writing this is to say, feeling this way does not make you a bad person, it doesn’t mean you wish for anyone else to go through this.

I also want to say that you don’t have to feel like this forever - Not at all.

Everything changed for me properly a couple of months ago, but the process started about seven months before that. I’d tried counselling but these feelings of grief were seeping into my life, my thought, my relationships and I knew I had to try something else.

 I explained how I felt to a very understanding GP who tried two different anti-depressants before putting me on a third that whilst made me feel very ill in the beginning and in the withdrawal but have massively helped me. I see now that my chemicals had just become imbalanced. After the long process of finding the right tablets for me and enduring the awful side effects of this, after finding the right one and being on it for two months all together I got better. I have to say that I finally feel at peace with myself. I feel at peace with my body and its limitations.

I don’t like when I get tired and feel ill, but this is just how it is and I know when to rest, when to stop.

In being able to accept things I see things differently too. Despite being desperate to move away from my town for years, I now see its quietness and friendliness to be just what I need to not be over faced and exhausted. I love that it’s small and rural and familiar.

I love that I can work 12 hours a week, I’m so proud that I’m able to do that. I wouldn’t want the typical student life as it would make me poorly and I’m not sad about that anymore. I’ve found what works for me and anything that keeps me able to do what I can is amazing. As hard as it’s all been and as much as it’d be nice not to have pots, it’s taught me so much. I can’t hate what I’ve been through as it’s made me who I’ve become. There isn’t such a thing as “I wish I could…” as you’ve really only got “I can…” and you have to work with that, you should be so proud of that in fact.

I know though that whilst thinking like this is so intrinsic to whom I am, I couldn’t have got to this place without a little help from taking anti-depressants for a short time.

Whilst I’m not saying they’re for everybody by any means, I think it’s important to say if you have been feeling this way for a long time and other outlets like counselling haven’t helped that it is worth looking at all the options as you really don’t need to feel that bad forever.

You may have some limitations, but you definitely don’t need to feel sad about them, sometimes your happy chemicals may have become a bit skewed and that’s ok. A lot changed for me in seven years, it’s inevitable that the chemicals would too.

I want to finish by reminding anyone reading this who has felt the same that it won’t and doesn’t always have to feel like this. Keep seeking help and keep being honest to the people who can help. Anyone can get depressed but if you have an illness that impacts your life I believe it’s all the more likely to happen. If it doesn’t that’s amazing and I’m so happy for you. If it does, it’s not a failure, it’s literally just chemicals and the most important thing you can do is seek help to feel better.

Thank you so much for reading,

Take care,

Big Hugs,

Molly xxx