Dealing with a chronic illness can be tough on many levels. You have your symptoms to deal with, the pain and the discomfort, flare-ups and all the ups and downs that come with it. But apart from the physical side, there can also be mental stress.
Living with chronic illness is no joke and it definitely can take a toll on your mental health. There are days where I feel completely hopeless and I am grieving for my health. And if you know this feeling too- know that that’s ok and you’re not alone with that.
Content warning: Mental Health, medical gaslighting
DISCLAIMER: Please note, that I am not a mental health professional, I am just talking about my own experiences. If you need mental health counseling, please ask a professional.
Over the years of struggling with these things, I have found some things that are helpful for me, and maybe some of them are helpful for you too.
The good thing is: you are never alone in the world with anything. Even if it feels like that sometimes, there’s always somebody out there with a similar experience.
How does my chronic illness affect my mental health?
There are many aspects of living with a chronic illness and it can create distress on many different levels. The most distressing factors are often the fact that you’re being doubted again and again, the unsteadiness of the illness, the loneliness and the financial worries. But of course, every situation is different and not everybody has the same issues.
These are the things that I have observed.
Being doubted and mistreated in the medical field
I suffer from ME/CFS (Myalgic Enzephalomyelitis or also known as Chronic Fatigue Syndrome), a disabling and complex illness that affects the whole body.
You can imagine, that being so limited in daily life is not easy. But there’s also all the stigma that comes with this illness, that makes living with it very hard.
Unfortunately, there is the false belief that ME/CFS is “just psychosomatic”, that those who are affected are “just lazy, depressed and they need to get out more”, and this false belief is still very common in the medical field because of a lack of understanding and information. (Of course, there’s nothing wrong with having a mental illness, but being falsely diagnosed repeatedly and having your symptoms downplayed can be very frustrating.) The topic is not being taught at universities, so doctors often have limited knowledge or false beliefs about it. Doctors are humans too- they can make mistakes! But what shouldn’t happen is to blame the patients for that.
Something that most people with ME/CFS have dealt with at some point is medical gaslighting. When doctors downplay your symptoms, or insist that your problem is psychological, without doing any further testing, is one of the most frustrating things. (And it is also bad practice: you cannot just diagnose someone with having a psychosomatic illness, without doing any psychological testing. Unfortunately, it happens more often than you would believe).
Sometimes doctors are so adamant about this, they act in a very patronizing and derogatory way towards their patients. Of course, not all doctors are like this, but the fact that almost every patient has at least one experience like this, is still too much.
When these things happen to you, it can be very distressing and make you start doubting yourself and your own experiences.
Fighting for years to be taken seriously is incredibly exhausting and in some cases, can be really traumatizing. Some people get so scared of doctors, they avoid going to the doctor or to the ER at all cost, because of what happened to them in the past.
The unsteadiness of chronic illness
Apart from the doubts and the mistreatments, there is also the everyday life with a chronic illness that can be hard on so many levels.
It’s a constant up and down and you never know, what you’re gonna get. There are good days, and there are bad days. And sometimes it’s a complete surprise. You get worse and you have no idea, why. Did I eat something wrong? Did I do too much without noticing? Living with a chronic illness means that your life isn’t steady, every day is different and that makes it hard to plan ahead. Having to cancel things that you were looking forward to because your body says “no” is extremely sad and frustrating, and that unsteadiness it can make it really difficult to have somewhat of a “normal” life.
People who are chronically ill often deal with loneliness and isolation, because their symptoms are so limiting, they can’t just go out and see friends, or at least not on a regular basis. Some are unable to work and housebound, so they spend most of their days at home. This can be a very isolating situation to be in.
But the feeling is much worse when you’re the only person who deals with something like this in your environment. Sometimes the people in your life just don’t get it, and that can feel incredibly isolating.
Financial issues and fears for the future
And then there’s also the uncertainty when it comes to money and security. Many people are unable to work, or some can only work a few hours a week. Existential fears are very common if you are chronically ill. Living with a chronic illness or disability is extremely expensive, while those affected often have a smaller income due to their limitations. Not being able to work creates immense anxiety for so many people, and many worry about their future.
Thinking about all these things doesn’t exactly create happiness, I know. But nevertheless, it’s important to speak about these things. While many of these problems can only really be fixed on a systemic level, there’s always something you can do for yourself, at least to make the current situation a bit more bearable.
Here are five ways of looking after myself that are helpful for me, and maybe some of them are helpful for you too:
1 Find support groups
One of the worst aspects of living with chronic illness is the loneliness and the isolation. After getting my diagnosis it was extremely important to me to find people, who were in a similar situation. People who knew, what it’s like to live with this. People who just ‘get it’, who are not being judgemental.
And knowing, that you’re not alone with something can be extremely comforting and it can give you hope. If other people somehow manage to live with this, I can do it too!
If there’s little understanding in your real life, there’s always the “online world”, and this is such a big advantage of social media. It can take away the feeling of being alone and thus lift a big burden off your shoulders.
How do you find support groups?
· Facebook groups
There are many Facebook Groups out there, either specific ones for your illness, some that are local, some that are open to people from everywhere. Whatever you’re dealing with or whatever you’re interested in, there are probably groups on Facebook that you could join. If they are well-moderated, it can feel like a safe space where you’re allowed to vent, ask questions and support each other.
It is important to note that sometimes these Facebook Groups can be a little bit too much, especially if a lot of it is about venting. Sometimes you may need a break, which is totally understandable. You can put the group settings on “mute” so you don’t constantly see it, but still stay a part of the group, or get out completely if you notice, that it’s not good for you. Whatever the case is- self-care always goes first. Even on the internet!
· Instagram and Twitter
Instagram is a great place where you can build your own little community by following and interacting with other people who are in similar situations or have similar interests.
A tip is to search for certain hashtags that are relevant to you, this way you can find people who post about the things that interest you. I have found some amazing people on Instagram who I am very grateful for, who I wouldn’t have met in real life! (Have we met on Instagram? Follow me @rea.strawhill :D)
Twitter is a great place to raise awareness and get your message across in a quick way, and to find some people who are in the same boat. For example, every Wednesday, under the hashtag #MeAwarenessHour, people share their experiences with their illness, to raise more awareness. It is a great medium to vent and share your thoughts as they happen, as it is very much to the point. (Have we met on twitter? Follow me @ReaStrawhill :D)
But as always: If being online every day is getting too much for you- don’t feel bad about logging out for a few days. While social media can be very comforting and distracting, it can get too much at times and stepping always is completely ok if necessary.
2 Set boundaries
No is not a bad word!
When we suffer from an illness that limits us in our daily life, we may not be able to do as much as we could before, and while that can feel incredibly frustrating, it’s ok to set boundaries. It’s not only ok to live your life according to your limitations- it’s absolutely necessary! Especially with an illness like ME/CFS, where doing too much actually has really bad consequences, it is important to stay within your boundaries.
We live in a society where performance is valued a lot, the more you accomplish, the better. But a person is not just the sum of their accomplishments- you are valuable just as you are. You don’t need to achieve a lot in order to be worthy.
Saying “no” often doesn’t come easy and maybe feels selfish at first. Or it can be a sad thing when you have to say no to an invitation you would have looked forward to. Feeling sad about such things is okay, but there’s no need to feel guilty about it at all.
The most important thing is your health, and people shouldn’t expect you to do things, that are bad for your health.
Prioritize your needs- and be unapologetic about it!
Prioritizing is an absolute necessity when living with chronic illness, and part of that is setting boundaries. If we have to say “no” a lot, it can feel like we are letting people down. We tend to apologize because we feel guilty. But the thing is- there’s no need to apologize for things you have no control over. If some people make you feel guilty because you couldn’t do a certain thing- maybe they’re the problem. It’s not your fault that you are sick. And it’s not your fault if your body doesn’t allow you to do certain things sometimes. You’re not being unreliable, you’re doing what’s necessary in that situation: taking care of yourself first. You can’t pour from an empty cup! Self-care isn’t selfish, it’s necessary and important.
So don’t feel guilty if you have to say no to certain things. It’s not your fault.
3 Don't force positivity
Sometimes life sucks. Sometimes life is really unfair and all you wanna do is scream and cry. And if that happens, there’s no reason to feel ashamed about that. Let it out!
When we grow up, we often learn that there are “good” feelings, and then there are “bad” feelings. And those bad feelings we don’t talk about or show anyone, because then we are supposedly “weak”. We grow up thinking, that strong people never cry or get angry or frustrated, and that a “good” person is always happy and positive. We think, that if we feel certain things, that’s a sign of personal failure and weakness.
But that’s not true! Everyone gets sad, angry, lonely or frustrated from time to time. You don’t have to swallow your feelings and suppress everything in order to seem “strong”. In fact, this is actually quite bad, as suppressed feelings always tend to find a way out.
Let your feelings happen, as they happen.
I learned to not judge myself constantly, but to just observe my thoughts and feelings as they come. If I’m sad- I’m sad, and that is ok! It doesn’t mean that I am weak, or a failure, if I have a day where all I can do is cry. If I feel bad, I just allow these feelings to happen, without judging them and judging myself. Instead, I try to really listen to myself, find out, what it is that is bothering me in that moment, and what these feelings are trying to “tell me”. Instead of suppressing, I let it happen.
I tried to let go of the expectation that I always have to be happy or positive, but just feel my feelings authentically. Allowing myself to be “negative” from time to time is incredibly liberating!
There are days where I lament, where I cry, where I tell my friends how sucky and unfair everything is and how much I hate all of that. Letting my feelings out, allows me to let them go and move on.
And when I’m happy about something, I’m happy! I still find lots of joy in life, but you don’t have to be happy and joyful 100% of the time. Especially not, if your’e sick.
There’s often the expectation, that people who are chronically ill or disabled have to be positive and inspirational in order to be seen as worthy. It’s a very ableist perspective to expect of someone to be your “inspiration porn”.
Let me tell you: you are worthy as a sick person, even if you are in a bad mood, angry or frustrated. Your life’s purpose is not to make other people happy.
4 Find distractions
Sometimes we need to let it all out, but sometimes all we need is a bit of escapism.
In the worst time of my life, the time around I got my diagnosis, I started devoting all my “functioning” time to my hobbies and my friends.
Unfortunately, I had to quit my singing group because it was too physically challenging, but I kept singing and playing instruments ever since. Music is my most important outlet for my emotions and the thing that is uplifting me the most.
I also started drawing and painting (in that year all my friends and family members got hand-painted tote bags), I started listening to crime podcasts and watching history documentaries. Learning about new things was always a way for me to escape my own reality, and focus my energy on something else.
Another great hobby is putting on makeup and dying my hair all kinds of colors. If you lie around all week, making yourself look all nice and dolled up can be incredibly uplifting!
Spending time outside whenever I can, is also extremely important to me. Whenever I spend time in nature, it’s like I’m recharging my batteries. And now that I’m so much more limited in how much I can be outside, those moments become even more special. This is a reason why I got into nature photography, because it’s like I can conserve my memories with my camera, so they can give me comfort on the days where I can’t go out. And on some days, I spend time with my friends and all we do is chat, eat and binge-watch drag race or other stupid reality TV shows.
Sometimes you need to have a good laugh in order to forget all the bad stuff, and whatever it is that makes you happy, go for it and be unapologetic about it.
But even when it comes to hobbies and positive stuff, it’s important to keep your boundaries in mind and not do too much on one day, even if that’s positive stuff. (I had to learn this the hard way!)
Even if that topic may be a little bit controversial in the ME/CFS community: I’ve found Psychotherapy extremely helpful.
I know, it can be frustrating to be falsely treated as being mentally ill for years. Being told again and again that all your problems will be fixed if you just went to a therapist. Some patients will become very frustrated with this and become very adverse towards the idea of therapy – and understandably so! But I have found a very good therapist even before I got diagnosed with ME/CFS, and I am very thankful to have her.
Of course, you cannot expect from therapy to cure your physical illness. That is not gonna happen. But for some things, therapy can be great!
What can you expect from Therapy?
As I said, Therapy won’t fix all your problems, and if you’re not open to it, it probably won’t work. But to me it has been extremely helpful and part of it is because I’ve found a very good therapist. Finding someone who you get along with, who you can tell everything without feeling judged, is the most important thing.
My therapist has guided me along the way, and helped me figure out stuff I wouldn’t have figured out myself. It is incredibly relieving to have a safe space where I can talk to someone professional about all my problems, with the mere goal of helping myself.
Anybody who has ever had therapy knows, that it’s not like talking to a friend. When you talk to a friend, it’s a two-sided relationship where both listen to and help each other. With therapy, the focus is on you alone. It is a way for you to vent, to let out all the emotions and to speak out all the thoughts you wouldn’t dare to say to anyone, without being judged.
Can therapy heal your physical illness? Of course not. But it can help you deal with it better, and with all the things that come with being chronically ill. It creates a place where you can talk about all your fears and worries, and find ways to cope with them.
I can certainly say, that I wouldn’t be where I am today, without my therapist.
In the last years, I’ve seen my therapist usually every two weeks. It has been incredible comforting to know, that, whenever something bad happens to me, I can soon talk about it with my therapist and then we’ll try and find a solution for me.
This has lifted a lot of mental stress from my shoulders and allowed me, to focus on my health way better.
Unfortunately, seeing a therapist still comes with a stigma and some people feel ashamed to take that step. Please know, that you never have to feel ashamed for seeking help!
It’s the smartest thing you can do for yourself in a situation, where it is hard for you to help yourself.
Remember, that looking after yourself, in whatever way is most helpful to you, is never selfish, or a sign of weakness. You are doing the best you can and you are allowed to feel as good as possible.
What are your favorite ways of looking after your mental health? Please let me know in the comments, or find me on social media @rea.strawhill
If you found this article helpful, please feel free to share it- that would mean a lot! Thank you!
Want to read more? Check out my last article on how to be an Ally for someone with a chronic illness or disability here!