Open Letter

Dear Reader,

You may be reading this because you know me, we may be family, we may be friends, we may not have spoken in years and you’re wondering what I am rambling on about. You may not know me, you could have stumbled across my website due to a simple Google search or you may have come across my social media. You may be a Cushing’s patient, you may be someone that cares for or knows a Cushing’s patient. You may be a rare disease patient, an advocate, you may suffer with your mental health, you may have a chronic illness. Whoever you are, I hope that my message is going to relate to most of you or relate to someone that you know. You might find it helpful and it might even provide an insight to chronic illness, rare disease and mental health or it might be a load of rubbish. Either way, I’m writing it anyway. It may not be the best piece of writing I have ever done, but I want to come across like a human, I want to feel as if I’m talking to you, not using fancy medical terms and stating facts.

Prior to my diagnosis in 2017, I always felt the need to shy away and hide my illness from the outside world. When I first published my blog and later went on to create this website, I received (and still do!) some hateful emails and comments from so called ‘trolls’ who clearly had nothing better to do than target me saying I was writing all of this for attention. It took me a long time to pluck up the courage and tell the world my story and I am glad I did, I wanted to raise awareness for Cushing’s and hoped it could help people relate. And it did just that. I have made so many new friends through this journey and I have helped others. Others that struggled with the diagnosis or the prospect of being diagnosed. I wanted others to know that they’re not alone and so many people would struggle to understand Cushing’s unless it was happening to them, or they had some form of third party knowledge; such as a parent, a partner, a carer or a friend.

So, I am writing this in an attempt to relate to anyone struggling with their mental and/or physical health. Mental health and chronic illness are HUGE in the media right now. However, in some respects, these issues are still quite stigmatised and even a taboo topic. This notion is utterly and completely wrong. Talking to others and reaching out to those who have opened their arms to help should not be regarded as something about which to be ashamed. Problems relating to undiagnosed or ignored health issues have affected a cross section of people in the modern world for decades. I feel that after being told I was no longer in remission and that my Cushing’s is back, and back with a vengeance, this is the right time for me to talk about mental health and how it is dealing with a chronic illness without being ashamed or embarrassed. Most people know me as someone with a constant smile on my face. What those people do not know is that I struggle constantly, day in, day out, with my health. There is no break. There are no ‘good days’ right now.

For everyone going through this experience, whether you’re in the early stages of testing, pre op, post op, in complete remission, or have relapsed for a second, third, fourth time, it’s ok not to be ‘ok’. I know it sounds cliche but it is true. Our brains and bodies are taking an absolute hammering; both overproduction of cortisol and cortisol withdrawal are seriously tough on us, mentally as well as physically. It’s absolutely understandable and it’s ok to grieve the person you were before. Damn, I have grieved the previous ‘me’ countless times. In 2015 when I was told that all of my issues were due to endometriosis and PCOS and that I had to have zoladex injections to bring on an early menopause or I would have to have a full hysterectomy, I was grieving the person I was before, a person who was not in pain daily. Then I was diagnosed with Cushing’s in 2017 when it was realised that the gynae issues were actually just a mask for Cushing’s, I grieved the person I was with gynae issues and wished I had that instead of Cushing’s. I then grieved after my neurosurgery as I struggled mentally during my remission and felt that I was making zero progress. And then in October, I grieved the person I was during remission. When I was given the news that my Cushing’s had returned, that I would have to have my adrenals removed, that I had gained 14kg in such a short amount of time, I felt soul destroyed. I have learned that it’s ok to feel like that. However, grief doesn’t last forever and soon enough you will remember the ‘better’ days and know that there are better days to come. Eventually. It’s got to the point now that my consultant asks me my symptoms and I don’t even know anymore, I live like this every day and I can’t wait to see the back of Cushing’s, it’s gonna be a long and uncertain road but I’ll get there.
I’ve always looked at photos of a time that I was ‘healthy’ and ‘better’. These photos are an unrealistic goal as they were from when I was a child. Yes, I was a lot slimmer and I even had some form of jawline, but I am looking at photos of a 17/18 year old version of myself. I’m 26 now, it’s unrealistic to think I would look like that if I was ‘healthy’. It’s difficult to accept who I am when I look in the mirror. I know that Cushing’s has dominated my life for as long as I can remember but it does not define me. Without sounding like I’m in ‘The Greatest Showman’, this is me. I am brave and I am definitely bruised, but, this is me. I will, one day, look in the mirror and be satisfied with what I see back. I’ll still be covered in scars but they’re my battle scars, they’re a reminder that I am strong.

For anyone dealing with an illness, either mental or physical, the fact that you’re still fighting means you’re strong. Taking medication to help you, mentally, doesn’t mean you’re weak, it means you’re strong enough to get help. Survival in itself is an accomplishment, getting out of bed each day, even if you don’t leave the house, is an accomplishment. Don’t listen to the people that tell you “it could be worse”, “you don’t look poorly”, “think positive” because they don’t battle every single day like you do and don’t be told by others how to live your life and make unrealistic suggestions such as “have you tried exercising to lose the weight” or “have you tried this diet, I lost 7000lbs on it”. Especially with Cushing’s NO amount of exercise or diet can help you lose the weight you’ve gained. Don’t punish yourself, cancel those plans to go out with friends if you don’t feel emotionally or physically capable, tell people how you feel, don’t keep anything bottled up inside of you and those people that matter, those that care, they will stand by you no matter what. Most importantly, be kind to yourself. Do things that make you happy, look after number one.

Instead of comparing myself to other people who have had Cushing’s and almost feel bitter because they’re recovering at a faster pace, I now tell myself that everyone’s journey is different, no two people are the same and I’m taking my time to recover once I have my BLA, this is my recovery, no one else’s.

The last thing that I would like to say, and this is directly to those suffering from Cushing’s or a chronic illness, is to appreciate and be grateful for those people that have continued to stand by you throughout your journey. I have been extremely blessed to have an amazingly supportive husband, parents, brother and small unit of friends that have supported me through thick and thin, encouraged me to make the most of my situation and most importantly, always taken the time to listen and understand. I have also made some very close friends because of Cushing’s, people who I wouldn’t know if I didn’t have this illness and I count my lucky stars that they are there for me and give me courage and strength when I really need it because they are the only ones that truly know what I am going through.
I have also grown to realise who really matters in my life. Times of hardship really show people’s true colours and life is too short to bother with people who don’t care.
Please, don’t suffer alone, don’t suffer in silence. Whatever you’re going through, there will be someone out there that wants to listen. As much as I hate to say it, social media is a valuable tool when going through tough times. If anyone reading this does feel that they have no one to turn to, please do get in touch and I will listen. I will try and help point you in the right direction.

The best message that I can give regarding Cushing’s, chronic illness and mental health is appreciate every single thing that you have that is good. Being ill is a learning curve and I have learnt so many important lessons about myself and also the people that have stood by me throughout the last however many years; I try my very best to make the most of life whenever I can.

So, there we have it, my very first open letter. I hope that you found it insightful, I have been open and honest in a hope that people can relate in some way.

Be kind to yourself, let go of those negative thoughts, give yourself time and permission for self love. Judgement of ourselves causes misery in relationships and in our own minds; learning to love without judgement is learning to love selflessly.

Amy x

“She resented her body’s betrayal. She still couldn’t express how insecure it made her, how she lived on a precipice. The most basic parts of her could fail, and there was nothing she could do to stop it.”

Zoje Stage, Baby Teeth