Updated: May 13, 2022
By Ella Marcham (she/her)
Physical health and mental health are closely connected, especially for those living with a chronic illness. Sometimes a bad physical health day can trigger a decline in mental health, or vice versa. This piece explores navigating through life whilst trying to find a balance between the constantly tipping scales of mental health and chronic illness.
I was recently diagnosed with endometriosis, a chronic health condition where endometrium-like tissue grows outside the uterus1. This condition causes a long list of symptoms and can vary in severity. Like many chronic illnesses, it is something that flares up and down, so the sufferer may seem okay one day and then cannot get out of bed the next day. Despite only recently being diagnosed, I have had symptoms of endometriosis for around 10 years.
I also have ADHD and anxiety, which leads to emotional dysregulation. This means I have trouble with overwhelming emotions and stress which can get out of hand quickly if I am unable to calm myself down. My symptoms of endometriosis often exacerbate my anxious thinking patterns. If I have a bad day and must cancel plans or stay home from lectures, I’m always so worried about what people will think of me. Chronic illness is often misunderstood by those on the outside looking in. I can understand this, if you’re someone who has no experience with chronic illness it might be easy to think “They’re ill AGAIN?” but that’s the issue; it’s not that they’re repeatedly getting ill, they live with a life long condition that can rear its head unpredictably. For example, after I had surgery to diagnose and remove my endometriosis, a lot of people thought this meant I was cured.
Unfortunately, there is currently no cure for endometriosis, and whilst surgery can improve symptoms, it isn’t a permanent fix. This was difficult for me, as I found myself having to constantly explain that I will potentially live with this forever, and that it’s a case of managing my symptoms and making reasonable adjustments to allow me to live my life to the fullest.
Something strange about endometriosis is that a staggering 54% of the UK population haven’t heard of it2. When you combine that statistic with the fact an estimated 1 in 10 people with a uterus have endometriosis3, it doesn’t really make sense. How can something so common be so unheard of? I think part of the reason for this is because the symptoms often relate to periods and reproductive organs, so it’s seen as taboo to talk about. The problem with this is that it isolates those that suffer, because they feel like they can’t talk about the symptoms they’re facing. This leads to people who feel like they constantly have to justify themselves and they also have to repeatedly explain the condition to people.
Another issue facing people with endometriosis is that the average time for a diagnosis is 7.5 years3. I’ve spoken to lots of people about their diagnosis journey, and a common factor seemed to be that they didn’t feel believed or listened to when describing the extent of their pain. When you’re in agony and have been dismissed by multiple doctors it leads to the feeling that it’s all in your head, that you’re overreacting and that there’s nothing wrong with you. This can have huge consequences for someone’s mental health. I was trapped in this cycle for years. I would end up in an ambulance screaming in pain, only to be discharged without any proper investigations. I genuinely broke down in tears when I finally got my diagnosis, just with the sheer relief that there was an explanation for my pain. Endometriosis, like other chronic conditions, can essentially sometimes just be unbelievable. It causes so many problems that people just can’t believe something so horrible exists, and that there’s no easy solution. This is a burden that we live with every day, and why so many people with endometriosis are trying to spread awareness of the condition.
My chronic illness and mental health conditions are often set off by each other. I have always been someone who worries, over analyses and makes up scenarios in my head. If my endometriosis gets so bad that I can’t look after myself, I am overwhelmed with depression and anxiety. When I can’t leave my bed, or have a shower by myself, or cook food, I feel worthless and a burden to those around me. For months, my husband had to help me get dressed, washed and he cooked all my meals. I had to move my bed downstairs, and I still now walk with a stick if I need to. At first, I just couldn’t come to terms with this. When I don’t have a flare up, I’m quite active and very social. When things got bad, I felt like my life had been stolen from me, and I was so angry and frustrated. I ended up in a state of survival, but I didn’t feel like I was truly living. I felt like it wasn’t worth being alive. That’s really hard for me to admit, but when your days are so miserable and you can’t do anything you enjoy, combined with being in pain most of the time, it seems like life just isn’t worth it.
So many people who experience chronic illness feel this way, you’re stuck in a world where hard work and success are valued, but you feel like you have to work five times as hard just to get by. I often feel lazy if I need to take a day to rest, but if my body needs it, I have to listen. The pandemic has brought an interesting perspective to this situation, as many of us now work from home. Communities across the world of people with disabilities and chronic illness, who have constantly been calling for more suitable adjustments to be in place, are now hoping that life after Covid-19 will be less ableist in this way. People should be able to work from home and be just as valued as those who can physically come in. It’s all about equity and making reasonable allowances to enable everyone to achieve their best.
I’m writing this piece as someone who has emerged from a very dark and difficult time, with a lot of lessons learned. I can safely say now that even though I still have challenging days, I am thriving. I’ve been to therapy in the past for my anxiety, and learned coping strategies to manage it, which was life changing. I also had to learn a lot when my physical health took a turn for the worse, and now I feel equipped to take on the world. Here are some things I have learned about how to manage mental health and chronic illness.
You can only try your best, and that is always good enough
Whether it’s in a job, university or even just in your personal life, you can only do your best, nobody can ask anything more of you. If you’re struggling with illness, you may need to take time to rest before tackling that essay or cleaning your house and that is okay. You may only be able to spend a few hours of time on something without completely burning yourself out. Give yourself permission to rest, everything else can wait. There’s normally a way round deadlines, and things that seem important are never as important as your health.
Try not to compare yourself to others
Especially with an invisible illness, others may not know what you’re going through. It may seem like everyone else is achieving more and having more fun and that you are missing out and that can be tough to deal with. Everyone has their own struggles and is trying to find their way just like you. Comparing yourself to other people usually makes you feel worse, and you can only control what you do, not others. A good way to combat this is to surround yourself with good friends and family and form a solid support network with them. Another brief note, social media isn’t usually a reflection of real life.
Be kind to yourself
It’s easy to get frustrated with yourself when you wish your body could hold itself together for one day so you can get things done. Try to breathe, step back and be present and patient. If you take the time to properly look after yourself, your mind and body will thank you for it.
Take each day as it comes
When you have a chronic illness, you can’t often plan very far ahead, because of its unpredictable nature. When you wake up, see how you feel and plan your day around that. If you need to, rest for a few hours and see if you pick up, and then maybe you can do some of the tasks on your to do list. I sometimes have days where I am hugely productive, followed by several rest days. It’s also useful to carry this mindset if you’re anxious about the future. Just remember what you can control and try to be present. Good days are wonderful and if you can remember how amazing you feel, this can be useful to remind yourself on bad days because bad days don’t last forever.
Give yourself some credit Life with any kind of mental illness or physical health condition is tough. Even small things should be celebrated because they’re often so difficult to do. On a bad day for me, taking a shower is a huge achievement. This may sound silly, but it’s worth reminding yourself of the things you’ve done to take care of yourself. I try to keep a journal to help manage my anxiety, and writing down all the things I have done, whether it’s as simple as a shower, a walk, some yoga, or seeing a friend, they’re all little things that contribute to your overall wellness.
Whether it’s a mental health condition or a chronic illness, everyone will go on their own journey to figure out how best to manage their life. The things above may be a starting point, but only you can determine what is best for you. Be an advocate for your own health and wellbeing and know that there are so many people out there who know what you’re going through. I’m writing from a perspective of endometriosis, but I know others with different conditions who face the same issues. Talking about my health with other people who understood, really improved my mental state as I felt less alone. Remember, there will always be someone who understands, and there is always help if you need it.
It is also worth noting here that whilst I use “people with a uterus” throughout, it is also possible for people who have had hysterectomies to still have endo. https://www.endometriosis-uk.org/endometriosis-facts-and-figures
(originally published 17/10/20)