Cat

Next in our ongoing series of ‘Your Behçet’s Stories’ we chatted with Cat, who shared with us her journey to diagnosis, as well as why she decided to start her amazingly successful podcast Rising from the Illness which focuses on giving hope to others with chronic illness and/or disability. Thank you so much to Cat for sharing your story with us!

Cat was diagnosed with Behçet’s when she was 23 but had symptoms for as long as she can remember. She lives in Salisbury with her partner Chris and her dog Milo.

When did you first start to get symptoms of Behçet’s and when did you get diagnosed?

It started off with ulcerations and joint pain. I think I was in Year 3 or Year 4 and my mum took me to the doctor because I was complaining about my hips and my knees. They didn’t know what was wrong with me and they thought I didn’t want to go to school because it was a weird pain that a child shouldn’t have. I also had swelling in the balls of my feet, which they thought was gout; also really unusual for a young girl. It was very difficult for the doctor and my mum to work out what was going on because it was all these weird isolated issues. I’d always had tonsillitis, and ulcers down my throat. This is going back for as long as I can remember being at school, 5 or 6 years old. They never really went away. Each symptom was dealt with as it came. 

I didn’t get diagnosed until I was 23. I was having ulcers, genital ulcers, and my joints were horrendous. I was feeling awful. I remember being sent to the sexual health clinic and they were telling me I’d got an awful infection, but they didn’t know what it was. I said “I don’t think it’s that, I’m not stupid, I know my body”. It wasn’t until they sent me to the most senior clinician who said I shouldn’t be there, and she referred me back to the doctors.

I saw a young student doctor, who said, “don’t Google it, but I have a feeling that you’ve got this condition”. She had only come across Behçet’s recently, but she had a hunch. She sent me to the rheumatologist at Salisbury Hospital and I was referred to the Behçet’s Centre of Excellence. The next time I called the doctors, I asked for her but they didn’t know which student doctor I’d seen. She had only been there for a few weeks, had diagnosed me with Behçet’s and got my journey moving. I’ve never seen her since. If I ever see her, I will give her a hug! She’s the reason why I’ve now got to the right path of treatment. 

How has your experience been at the London Behçet’s Centre of Excellence?

Amazing. I’ve been with them for years now. I’ve had some weird symptoms that wouldn’t necessarily be typical of Behçet’s. I love the fact that when I go to London it’s just normal. I’m not a special case again. Everyone there is dealing with the same thing. It’s nice to feel welcomed and just a person, rather than that one no doctor wants to see. At the doctors’ surgery whenever they see things that they never normally see, they always say “oh, do you mind if we get all the student doctors in?!” They all come in and are looking at me and saying “oh I’ve never seen that before”. So it’s nice that in London you’re not a special case, you’re just a patient with a condition. 

What have you found the most difficult thing about having Behçet’s?

I’ve lost my independence. Everyone always says that’s ridiculous that it’s the most difficult thing because there are physical things I’ve had to go through, like being tube-fed, and having seizures, but it’s that I’ve lost my old life. I had my own business, I used to travel all the time, and I was always on stage working. To give up that life that I had always dreamed of and worked towards, is hard.

I can do things for myself but I have to be supervised. I can’t walk to the shop on my own. Sometimes I’m able to walk with my walking aid, or a stick, but I can’t go on my own, because I might pass out or have a seizure. Obviously, I lost my driving license as well.

I’ve gone from being so independent and living on my own, to having everything done for me. People have to shave my legs, wash my hair, and I have to be supervised if I’m in the bath. I can’t ever do anything on my own anymore. That’s the thing that I really struggle with the most. You feel a bit trapped, having that life taken away from you.

Is there anything that you’re able to do, that you can focus on?

The main thing that’s been my focus is my podcast. That’s my project that I totally taught myself. It has become my therapy.

I love cooking and baking, but I’ve got to be really careful. I can’t use sharp knives when no one is here. Sometimes I bake and have my mum on Facetime, and my boyfriend sets everything out for me. Recently I’ve been passing out a lot. Every time I stand up, I pass out. It got to a point where the doctors have said, “just don’t do anything that will make you pass out!”. At the moment, I’m scared about going to the toilet, because we don’t have carpet in the hallway or in the toilet, so if I fall, I’m going to crack my head. It’s impractical to tell me just to sit on a sofa, but I’ve got used to it.  I have to stay sat down, and make sure I’ve got everything I need. I’ve always got my backpack with me with everything in it that I need; my purse, hairbrush, deodorant, water, meds etc… My boyfriend always laughs at me “oh yeah, you’re going on your journeys again”.

My life is ruled by medication, and by the condition. Sometimes it feels like you’re in prison. I take medicine every 2 hours every day. I’ve got to plan everything. My friend might offer to take me out in the wheelchair and I have to say “How big is your car? ‘Cause I need to fit the wheelchair in. Is there going to be a toilet there?” It’s a constant plan and a jigsaw puzzle. That’s what frustrates me the most, that this is just my life now. 

Would you like to tell us more about your Rising from the Illness podcast and your YouTube channel, how they are going and why you started them?

I’m always one for silly ideas, and giving myself a massive challenge! When I was first diagnosed, I hadn’t heard of Behçet’s. I felt really lost and I needed someone to understand. At the time, I was married and my husband found it very difficult to understand how I was fine one day, and then the next day I couldn’t get out of bed. As my illness got progressively worse, the marriage broke down, and he left. I blamed myself because I thought my illness was the reason, which might have been a part of it, but, sometimes people are just not meant to be. It was such a bad time. My husband had left, my dad had just died, and I lost both my grandparents. Then I lost my job because of my illness. Everything was rock bottom for me, and I didn’t see a way out. I was being tube-fed and I couldn’t get out of bed. I had a carer. I couldn’t even go to the toilet on my own.

I was put on plasma exchange, and things started to get a little better. I realised that I could get through it. When I started coming out of that really dark time, I told myself that once I was able to, I wanted to share what I’d been through to help others. I’d hate to think that anyone else would be in the same situation.  I was living in my mum’s family home. My mum had to convert her dining room into my bedroom because I couldn’t get up the stairs. My brother and his wife were also living there at the time with my niece, so I was in such a full house, but I felt so alone. I felt like no one understood. You could see how ill I was, I went down to about 6 stone, but I don’t think anyone grasped how I was feeling. I had horrible thoughts. I felt like I was in a waiting room. Part of me just wanted to be with my dad, who had passed away. If I’d had something to listen to, or watch, and knew there was someone else going through something similar, that would have helped. Through the years, social media has improved so much. You can become much more connected now with people just like you. It was my goal, that I had to do something. 

I started off with a blog. I still blog for The Mighty. I was getting great feedback from them so, I wanted to do more. I’m okay at writing but I’m a performer, so either talking or making videos is more me. So I just randomly said to my partner Chris “I’m going to start a podcast!”. I started it in July 2020 and I shared my story. I started to have guests on the podcast who have a wide range of conditions. Some guests don’t have conditions but have things they can offer to help people, for example, a hypnotherapist.  

It’s in about 17 countries now and I’m in some podcast charts too! I’m in the Mongolia and Tunisia charts. My biggest achievement was Turkey because obviously that’s where Behçet’s originated from, so to be in the Turkish podcast chart for Health and Fitness is really good. It’s great that it has touched so many people. I just want to raise awareness of rare diseases, chronic diseases and invisible disability, and reach out a hand for people. I’ve had so many messages thanking me.

Whenever I do an interview with anyone with a chronic illness, you feel you’re instantly connected. It has helped me so much. I’ve built this community of people who I can call my friends. We check in on each other all the time and it’s amazing to have that support.

Do you have a favourite episode that you’ve recorded or a favourite interview?

There’s a lady called Lyndsay and she is the founder of a company called Neo-Walk who design funky walking sticks and walking aids. They’re different colours, different shapes and some light up! She is trying to abolish the thought of mobility aids and sticks being for old people. You can have a stick to match your outfit. I’ve got three now! I’ve got one that she made personally for me which is pink, fairy themed and engraved saying ‘Never lose your sparkle’! I had her on the podcast and she’s incredible. She’s an above the knee amputee and she even performed at the Paralympics closing ceremony a few years ago!

We know that you have an amazing dog that s​upports you – would you like to tell us more about him?

I actually have two now! I have Ralph who lives with my mum. When I lived there, we got two labs, Ralph and Roxy. They gave me a purpose, as they made me want to try to get out of bed. Ralph instantly created this bond with me. He knew that I needed protecting and looking after. When I was really poorly, he’d get on the bed to be with me. He knew when I was going to have a seizure and sometimes he’d try to break my fall a little bit. He would bark when I passed out and would get help. He’s always been so in tune with me, and we’ve never trained him to do that, it’s just how he is.

We agreed that when it eventually came to a time that I was well enough to move out, that mum would keep Ralph for company for her. Chris and I decided that I still need that companionship, so we got a puppy, another lab called Milo. For a while, we had both Milo and Ralph here together, and Milo picked up things from Ralph. He mimics him. Every person who meets Milo has said “he doesn’t act like a puppy! He’s so calm around you, it’s unreal!”. When I’m on the floor, Ralph would roll right up next to me to keep me on my side so that I don’t move. Milo’s not got there yet! But, he’s still brill. When I’m ill, he knows, and he doesn’t leave my side.

In terms of your wellbeing, is there anything else that helps you?

I do Tai Chi, which was recommended to me by someone I met through my podcast who has MS. I sometimes sit in a chair to do it. Other times if I feel okay and Chris is here, I’ll stand and do it. It really depends how I’m feeling. I’m conscious of not wanting my muscles to waste away, but I also don’t want to overdo it. Even sitting down, it has really helped me. Breathing exercises help me too. 

Another thing is just getting outside and getting some fresh air. Chris is brilliant for saying “we’ll get your wheelchair out”. If I feel alright with my stick, we’ll walk to the post box and back.  

I listen to a lot of music as well. I used to sing and still do but not as much now. I get frustrated as my lungs are not as strong as they were. I still sing with my amazing friend Lily sometimes on Facetime, and that is a real release for me. I’m still in a choir, the Evolution Choir. We’ve done some fundraising for Behçet’s UK before and I’m sure we’ll continue to do that as soon as we can gig again. The choir have helped me to be involved safely, by making sure we’re socially distanced.

Do you have any tips for others in regards to managing your Behçet’s symptoms?

Definitely keep on top of your medication. It’s very easy to forget. Get yourself organised. I’ve got a pill box now with 7 days and 4 compartments for each day.

I used to be awful with remembering to clean my feeding tube. It is horrible because it takes over your life, but keeping on top of it really does make a difference. 

Keep a diary of when you have flare-ups or really bad symptoms. That can help diagnose anything else going on. Normally if you go to the GP they’ll say, “can you go away and make a diary?”, so if you’ve already got it, you can say “I’ve done this!”. 

Speak up for yourself because there’s so many times you can get pushed aside by doctors. It’s okay to say “no I’m not happy with that, can you do something about this?”.

Be kind to yourself and let yourself breathe. It’s okay to feel in pain and to struggle, but just accept that. You’ve got this condition, which is horrendous and extraordinary. It’s not what a normal person would go through so give yourself credit for that. 

I say to so many people, it is hard that I’ve lost my old life, and that I have rely on people, but I’ve also never been more comfortable in my own skin. Sometimes I pinch myself because I never in a million years thought that I’d ever be this happy. I did a whole video on my YouTube channel about my journey with losing my husband, and feeling that no one would want me as I am. I used to refer to myself as a “broken toy on a shelf”. But Chris met me when I was still pretty poorly. I was still being tube-fed and was in a wheelchair, but he saw past all that and saw me as the person I’ve always been. I want to say to people don’t give up. Chris is a virologist so I couldn’t have found a better partner. He understands everything better than me! My life’s still not perfect. Some days it’s still rubbish, but there is hope. 

Thank you so much to Cat for answering our questions!

Follow Cat on Instagram @risingfromtheillness and listen to her podcast on Apple Podcasts or Spotify. In case you missed it, Cat recorded an episode featuring an interview with our Chair Tony Thornburn, which you can listen to here.

Interview published 19/10/2021

Could your story help others?

We would like to share your personal experiences of diagnosis and living with Behçet’s, and we’d like to hear from a wide variety of patients, of all ages and backgrounds. We’d also like to hear from carers and/or family members of those affected by the condition. 

If you’re a patient you might have some particular tips for managing your condition day-to-day that you would like to share to help others, or you might simply like to tell us your story of diagnosis or about a recent fundraising event you’ve been involved in. If you’re a carer or family member of someone affected by Behçet’s, you might wish to share your personal experiences of caring for someone with a rare condition. You can share as much or as little as you want with us.

If you are interested in taking part and would like to know more please email Deborah at info@behcetsuk.org

We look forward to hearing from you!