Hello, all! Today we’re sharing an interview with Eleni Brooks, a young lady who has had an experience with something that can make her feel wilted: a chronic illness called PCOS.

This is a special interview because it features our very own Beth Cordle asking her real life friend questions.

We hope it will encourage all of you!

For the sake of our readers, tell us a little about yourself.

Hiya! Like Beth said my name is Eleni but I also get called Elly for short. I’m 18 years old and I’m currently living in Worcestershire, UK. I’ve just finished college and I start studying midwifery at university next September. I’ve just started my gap year but my plans are uncertain due to the pandemic.

What is your chronic illness and when did you discover you had it?

It’s called “Polycystic Ovarian Syndrome” (or PCOS). I was diagnosed with it when I was 12. I spent that Summer really ill. I was sick every day, had really bad headaches, and struggled to do much. I went to the doctors after a few weeks and, after ruling out other options, I was diagnosed with PCOS. 

You need two of three symptoms to be diagnosed with PCOS- excess testosterone (male hormones), irregular periods, and polycystic ovaries (meaning they are enlarged and contain fluid-filled sacs surrounding the eggs). It’s called “Polycystic” but you don’t actually have to have cysts. Currently, I have all three of those symptoms. 

PCOS is mainly hormonal, and it affects different women in different ways.

What does having PCOS mean for your life, medically and in terms of pain?

I would say on the scale of how much PCOS affects people, I’m probably somewhere in the middle. I know some people who have what I consider a “bad day” every day. However, I also know of some people who have it and it doesn’t affect their lives at all, or it affects it in different ways.

For me, some of it is obvious. I’ve got quite dark hair on my arms and face because of the extra testosterone. That doesn’t affect me pain wise but it can upset me mentally. I don’t really like it and I’ve been on different medications to try to sort it but so far nothing has worked.

I often get bad stomach cramps (especially during my period, but they’re unpredictable, so I can get them whenever) and I would say those, alongside the headaches/migraines, are what affect me most. I normally spend the first two days of my period in bed, so whatever I’ve planned, I end up not doing, which can be difficult. It can be particularly hard with it so irregular because I don’t know when it’s coming and suddenly life is put on hold.

There’s some exhaustion as well. I’ll often have a day where I’m fine insomuch as I don’t feel sick, I haven’t got a headache, and I don’t have cramps but I’ll feel really drained.

How does having a chronic illness affect your life outside of pain (socially, mentally,etc.)?

Having any chronic illness puts you more at risk of having anxiety or depression since you’re dealing with the illness itself but, with PCOS, there’s a higher risk because your hormones are affected. So, biologically and not just because of your circumstances, your response can be anxiety or depression. 

In terms of myself, feeling anxious and depressed varies a lot. I can have really good seasons of life or really bad seasons and, when I was first diagnosed, I was very anxious because of being sick all the time. I also went on the contraceptive pill, which was used to help regulate my periods and sort out the hormonal imbalance. Whilst it did do both of those things, it also gave me depression as a side effect. It wasn’t until I came off them that I realised they were the cause.

Most of the time, it doesn’t affect me socially but sometimes it does. In day-to-day life, a lot of people wouldn’t know I have PCOS because I’m able to do most of the things everyone else does, although they do drain me. For example, when I go to my friends’ house and they want to stay up to watch a film, it can be hard because I’m already exhausted from travelling to see them. I do try to stay up, but I end up tired. It’s difficult because I want to do everything everyone else is doing but my body just isn’t the same.

Have people ever mistreated you because of or made fun of your chronic illness? 

I don’t think anyone’s ever made fun of me for it. I have had a few dismissive comments, though.

If you tell someone you have cancer, everyone knows what that is and how it affects people. However, PCOS is something that affects your day-to-day life without being obvious. When I pull out of things, people can say “You didn’t want to come” or “You’re being lazy”. I think the root problem is people not knowing what it is. I completely get that, if someone doesn’t know I have PCOS, they may think I’m unreliable or lazy because I pull out of things but it can still hurt. That’s one of the reasons I try to talk about it on my social media or in person- so people know about it and how it affects people. 

People can be discouraging without realising and some people are deliberate but, most of the time, people are understanding.

If people have questions about PCOS should they just ask or should they respect your privacy and wait for you to bring it up?

This depends on the person. If people have questions for me then YES ASK ME ALL THE QUESTIONS. I love raising awareness, sharing my story, and having conversations that educate people.

However, there was definitely a time when I didn’t want to talk about it and would find it hard to respond when people asked me. I can’t answer that question for everyone, but speaking personally if you’re willing to have an honest answer then ask me whatever you want.

Have you ever felt ashamed of your illness or ashamed to talk about it to others? 

When I was first diagnosed, I didn’t like talking to people about it. Because of my vomiting and headaches, lots of people knew I was ill. It was thought that I could have had a brain tumour and I know a lot of people were praying for me which was amazing. Because I didn’t end up with a brain tumour, everyone wanted to know what was wrong with me and when asked, I replied, “Well… it’s a hormonal thing…”, which at that age was awkward to say. Also, saying “It’s just hormones” can make it sound quite brush-off. I also wanted people to see me as normal, whereas now I want them to know so they can understand me better. 

I still occasionally feel somewhat ashamed if it comes up in conversation, especially if someone says “That doesn’t really affect people, does it? It’s just hormones”. When I don’t stand up for myself as I should, I always regret my silence afterwards. Other times I don’t want to talk about it too much in case people say I want attention and pity but I just want people to understand it more.

In general, though, I’m not ashamed and am more than happy to chat about it. 

How did your chronic illness affect your faith and your Christian journey?

When I was on the pill, I was quite depressed and anxious. This made Church hard for me, as well as making me not like or trust God. I’m not sure when I became a Christian, as it was quite gradual. It was a journey of getting to a point where, one day, I knew I was a Christian but that wasn’t the day I became one. I began thinking a lot more about my faith during the time I thought I had a brain tumour. I started to believe I was going to die and it made me wonder “If I do, what would happen? I can’t just say that my parents are Christians, and I’ve grown up in Church. What would I say if I’m asked why I should go to Heaven?”. 

Now I find it’s the times I’m most anxious that I feel the closest to God. When I’m anxious, I keep thinking, “I’m not in control”, whereas actually that’s the point and it’s making me realise, “I’m not in control. I don’t need to be in control. God’s in control”.

Sometimes I think, “Why has this happened?”, but I don’t believe that’s wrong. I’ve been thinking about this a lot and something that struck me is how, when Jesus was on the Cross, He asked “Why have you forsaken me?”. He knew why God had forsaken Him and He knew the plan, but he still asked why. In the same way, I know God is sovereign, He has a plan, and I know that when I get to Heaven it will make up for the pain I’ve had in this life. 

Scripture says our trials produce wisdom, endurance, and perseverance and that’s definitely true. I’ve experienced a closeness to Christ that I probably wouldn’t have experienced if I hadn’t had PCOS. Whilst it’s been difficult, I feel like I know God more because of it. He’s the one that’s been with me the most through it all. 

Illness isn’t something that gives an excuse to not pursue holiness or live for God. Just because I get tired, doesn’t mean I should live however I want. I have to live for God and show Him through this.

What would your advice be to someone who is currently struggling with a chronic illness (maybe they’ve just been diagnosed or they’ve been struggling for a while)? 

For someone who’s just been diagnosed: Although it sounds simple and it may not be the quick tip that everyone wants- you have to commit yourself entirely to God. You have to make sure you’re grounded in your knowledge of Him. You always have God with you, so learn that now and prioritise Him. 

Also, try to find a friend that has a chronic illness too. If you know someone who’s had/has one, talk to them because, although all my friends are helpful, there’s something special about someone that knows the exact thing you’ve been through. 

For someone who’s been dealing with a chronic illness for a long time: I essentially have the same advice except keep going. Keep drawing closer to God. We will be made new. Until then all we can do is wait and learn to trust him more.

Was there anything that specifically helped you through your tough times?

There are various friends and family members that have been helpful at different times. One of my best friends also has a chronic illness (Crohn’s Disease). We were both diagnosed at around the same time, at which point we weren’t that close (mainly because neither of us were seeing people, since we were at hospital or at home) but recently, because we have that common bond, she’s been really helpful. 

A verse I’ve come to love is Psalm 27:13-14 (NIV) “I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart, and wait for the Lord”. We have to remain confident because, if we don’t, we’ll collapse. I know I will see God’s goodness in Heaven, but until then I know I need to wait, be strong, and take heart. We all have things we want to be free from but we have to wait. Goodness is coming.

Also, when the woman with the issue of blood touched Jesus’ garment, I love the verse where it says “Immediately her bleeding stopped and she felt in her body that she was freed from her suffering” (Mark 5:29, NIV). As someone who has pain in my body, when I read that verse I become overwhelmed. I think to myself “There will be a day in Heaven where I will feel in my body that I’m free from my suffering”. Yes, everyone will feel that (because not everyone’s suffering is physical) but I just find it particularly encouraging as someone who has pain in their body.

What’s the most frustrating thing about interactions with people without a chronic illness?

Everyone knows how tiredness feels, but with a chronic illness you know a different level of exhaustion. I find it difficult when people tell me to push through and go out with them anyway or when they say “We’ve planned this for ages, can’t you just come?”. I want to go with them but they don’t understand I physically can’t. 

Another frustrating thing is when women say “Yes, I have bad periods too”. I understand women can have bad periods, which is difficult for them, but simply having really bad periods is not the same as having a life-affecting illness. I’m not saying I’ll judge you if you say you have bad periods, I’m saying you need to remember it’s not the same thing. Maybe if they’re really bad you should go and get checked because you could have PCOS yourself. 

One of the most annoying things is when people say “I have a friend who has PCOS and she’s fine”. Like I’ve said, it affects everyone differently, which is why it isn’t the most helpful comment.

PCOS has no cure and there’s not a lot of information about it, so it’s very difficult to get help and suitable treatment. There are some treatments available, which I’ve tried but they didn’t work for me. This makes it difficult when someone says, “I know of this diet/vitamin that will cure you”. Yes, diet has a big effect on PCOS, BUT no diet is going to completely fix it. 

How can people best encourage and help you (especially if they haven’t suffered from a chronic illness themselves)? 

By trying to understand. 

I’ve had a few times where I’ve planned something and had to pull out last minute. Most people are really understanding and that makes me feel so much better because I feel guilty for cancelling. In a sense, I shouldn’t feel bad because I can’t help it, but whenever I quit anything I’m always super apologetic. When someone says, “No, it’s fine. Let’s just rearrange” it floods me with comfort. I’ve made peace with knowing this is how I will live my life (although it’s annoying at times), so the best friends I have are the ones who get that. 

One of the most encouraging things my friends can do, whether they’ve suffered with a chronic illness or not, is pointing me back to Jesus. When they say, “I don’t understand this, but I’ll pray for you” or “Here’s a Bible verse to encourage you” it’s wonderful. 

Overall in terms of how you treat people, if you treat them with love and grace, you can’t go wrong.

Do you recommend any resources that could be helpful or encouraging concerning suffering from chronic illness? 

Hope When It Hurts by Kristen Wetherell and Sarah Walton is a great devotional about suffering and chronic illness.

Other books:

Invest Your Suffering by Paul Mallard

Walking With God Through Pain and Suffering by Tim Keller

Kiss the Wave by Dave Furman

Therefore I Have Hope by Cameron Cole

Songs:

Glory in the Darkest Place – album by Brittany Hope

The Burning Edge of Dawn – album by Andrew Peterson

Always Good & All Things Together  – songs by Andrew Peterson

Behold The Lamb – song by Getty’s

We Will Feast In the House of Zion – song by Sandra McCracken

I have a Spotify playlist, full of songs that fill me with peace, and remind me of how great God is. 

Disclaimer: I’m speaking specifically of my chronic illness in this interview. Just because you know one person that has a chronic illness, doesn’t mean you know how it affects everyone. Even people of the same illness can be affected differently.