Vicki
For our next interview in our series of ‘Your Behçet’s Stories’ we chatted with Vicki, who shared her experiences of being misdiagnosed for many years, her keen interest in theatre and disability activism, and how she finds support amongst the online spoonie community. Thank you to Vicki for sharing your story with us. If you’d like to take part in the series as well, the details are at the bottom of the page.
Vicki lives in Canterbury and was diagnosed with Behçet’s a few years ago at the age of about 36, but had struggled with symptoms since she was a child and for a long time was misdiagnosed with lupus. Vicki ran her own theatre company for ten years, and now works part-time in an arts centre whilst she is in the process of setting up a new theatre company with a friend.
When and how did you get diagnosed with Behçet’s?
As a child I was constantly off school with tonsillitis, odd flu-like symptoms and ulcers. I’ve got a feeling it never was tonsillitis. My sister and I both had our tonsils out at the same time, as we both had very similar symptoms. I also had a lot of digestive problems and stomach migraines. I struggled with secondary school as I had fatigue all the time. I had my appendix out when I was 17. That triggered a bout of glandular fever from which I just never recovered. I repeated my first year of A-levels, and I was branded as “lazy” because I just couldn’t stay awake in lessons. When I was doing my A-levels I literally would lay on the table and fall asleep. I was told I was doing too much or having too much fun! I remember even in my history A-level exam, I fell asleep half way through and I failed the exam.
I was constantly going to the doctors about all these symptoms, but I don’t know if Behçet’s was as well-known then. I was misdiagnosed with lupus for a very long time and was not responding well to treatment for that. I went to University College London Hospitals to their lupus clinic and they spotted straight away that it wasn’t lupus, but then I had to wait months to see the mouth doctor there. She took one look at my mouth and said “that’s Behçet’s”, which I’d never heard of. Looking back, I’ve had it since I was a child.
It was quite scary when they said it wasn’t lupus, as I didn’t want to be back to being undiagnosed, but having the Behcet’s diagnosis has been really good because you finally go “ahh that’s why all these things happen”.
I’m seen now at the London Centre of Excellence which is good because all the care’s in one place. To see people that understand it and can explain everything to you is really important. It’s good that they involve you in the conversations about your treatment.
I waited over 30 years for the proper diagnosis. I was showing Behçet’s symptoms when I was about 4 or 5 years old. My sister is similar to me and is diagnosed with a different auto-inflammatory condition. She has gone a similar route of juvenile arthritis and then lupus, to then something new and unknown.
The other issue for me is I’m also on the hypermobility spectrum and have quite a lot of issues with that and I’m really borderline of Ehlers-Danlos syndromes. So, every time I have something going on, everybody finds it hard to pinpoint which condition it is. So, digestive issues could be caused by both. It tends to be that I injure myself with the hypermobility and that aggravates the Behçet’s. I also have polyarthralgia as well.
What have you found the most difficult thing about having Behçet’s?
Fatigue is the worst part of it because it’s really hard to explain to other people. The hardest thing for me was giving up work. I had my own theatre company for ten years and I lectured in theatre as well at two local universities. I loved it, but in 2016 I was in and out of hospital all the time. I used to go to work and have to leave early because I was in a lot of pain, and when I’m in a lot of pain, I end up being sick. I used to have to stop my car at the side of the road to have to throw up on my way home. It got to the point when I was lecturing where I’d set people tasks and run to the toilet. I realised that wasn’t a normal way of living. So, it all went very wrong. I lost my work and my relationship broke down and I had to go bankrupt. Then I was made homeless because my landlord wouldn’t accept benefits. So, I stayed in a friend’s room for about a year and a half, but then I ended up in a homeless hostel. That was all before my diagnosis. I am very open about having had two suicide attempts during that time. It makes me really cross because on my records there’s something called adjustment disorder which says I react abnormally to change(!) when there was quite a lot that went on! I think it’s really important to talk about that side of it and tell people how difficult it was.
In the end, it was having the support of Jean, the support coordinator at the London centre, that helped me. She and Steve, the psychologist, wrote a lot of letters for me. I was diagnosed with bipolar at that time as well. They did a lot of supporting letters to get me housing. Stress is obviously a huge factor in controlling Behçet’s, so it was about getting level. Steve really pushed for me to have some long-term therapy locally which was really hard to get.
You mentioned to us how useful you’ve found online support. Which groups or website have you found helpful?
Mainly I’ve found Instagram helpful. I don’t mind some of the support groups but they can be a bit intense. I’ve found that as I am quite creative, it can be really therapeutic to connect with others who are also creative and are in similar situations. It gives you a sense of purpose. I’m into gardening, baking, crafting and taking photos. I find being in nature really healing. One of the nicer parts of having a condition is that it forces you to slow down. It’s an unexpected gift and it’s a different pace of life.
I use Facebook a little bit and during lockdown I set up a really small group for people who were shielding so we could chat and share news with each other. I’ve also been part of a group called Magical Women which is for neurodivergent women. I’ve never had a diagnosis of autism but I’ve had a few neurodivergent women say to me that maybe I have autism, but I can’t be bothered to chase another diagnosis right now having gone through the diagnosis journey for Behçet’s and hypermobility.
Behçet’s UK are fantastic, the resources and the support is completely amazing. I think people with other conditions are jealous because they’re so proactive and really supportive. The Medicine & Me event was really good. Being able to be part of talks, even as an observer, is so important as a patient to be included in the understanding of what’s going on medically, and not just treated like you’re an object of fascination. Also, Behçet’s UK helped when I moved into my flat, they helped me get a mattress and a fridge. It’s really weird but in a homeless hostel, they give you a microwave, a kettle and a camp bed, a mug, two plates and some cutlery. You don’t even get a fridge, so it was a problem because they put me on to Humira and you have to keep it in the fridge. My mum lent me a camping stove and from Aldi I got a mini cupcake oven which wouldn’t fit a whole pizza so I had to cut it up to fit in! I just saw it as a challenge and I even managed to bake bread in there! It’s amazing how you adapt. It becomes an adventure, a weird adventure.
When I was diagnosed with lupus, as the image that represents lupus is a wolf, I started writing to the “the wolf” as a sort of therapy. I saw that as a bit of an analogy for having a chronic illness, as the wolf in fairy tales is the sinister bad guy. Quite often it is, but the wolf can also be quite gentle, nurturing, slow and wild. So, it’s when you fight the wolf too hard, when you push against it, that you end up in that battle where you lose. But if you’re gentle with the wolf you can learn a different side of it.
You said that you refer to yourself as a spoonie, what does being a mean a spoonie mean to you?
Spoon theory came from a blogger called Christine Miserandino. (You can read about the origins of spoon theory here). It tries to explain the energy that you have and describe pacing. Obviously if you don’t have energy limits you’ve got quite a large number of spoons or even limitless spoons, but when you’ve got an energy limit, you have to choose where to spend them, so I have to be quite strict with how I do things. So, I work in front of house in an arts centre, but I have a limit of 12 hours a week and not more than four hours in a shift. If I stick to that I seem to be able to control my energy.
It also connects you to other people and you feel part of that community. The only thing that doesn’t work with the theory is how unpredictable energy levels are.
Cognitive Behavioural Therapy (CBT) taught me to balance areas of my life, so I’m not going to spend all my spoons on work or on cleaning, but actually I really need some creative time, time outside, or time watching Netflix.
You said you have a big interest in disability activism, would you like to tell us more about that?
At the moment I’m working with a friend who is visually impaired to create a new theatre company. The Arts Council are now much more about funding minority groups and putting support into place, like access workers, which would just completely open the door to that part of my life again, so I’m really excited!
We’re working on a script called “Conversations with a Cripple”, about that inner dialogue you have as a disabled person during everyday events. For example, my friend Suzy is sometimes told she looks “too capable(!)” if she goes out with her guide dog.
On occasion I sometimes use a walking stick and I just love the reactions people have to it, like asking if you’ve been in a ski-ing accident(!). Where does that even come from?! I’ve never skied in my life! We quite like to see the funny side of it. Our theatre company have obviously not been able to meet in person so we’re planning a series of videos that are looking at the funny situations that disabled people get themselves into.
Some of the situations you find yourself in are quite shocking but I try to keep a sense of humour about them. That’s really helped my resilience and finding a voice within that. Disabled doesn’t mean broken or bad, it’s just a different way of your body functioning. Finding the social model of disability really helped, the social model being that it’s society that makes it hard to function as a disabled person, not to say that the body’s at fault constantly and trying to fix the body. I spent a lot of my time and energy looking for a cure, or the answers to everything, and it’s just accepting that my body needs slow and gentle. It’s a different way of living.
It’s quite hard to be an activist in physical spaces with disability because everything’s marches or stand-ins, which aren’t very disability friendly! But there’s definitely a big movement online I found through Instagram.
Do you have any tips for others in regards to managing your symptoms or your flare-ups of Behçet’s?
I just think it’s about being really gentle with yourself, not blaming yourself because it’s not you that’s causing it. Always schedule time in to enjoy yourself. You don’t have to be constantly miserable or suffering to prove it. It’s a common theme across a lot of disability. I know that I and others have been marked down for their PIP interviews for saying we enjoy things like gardening, but they don’t see how you garden, that everything’s raised, you’ve got longer tools or you do everything in pots. You get that side of it from PIP that if you’re enjoying yourself, you must be capable. You can be capable, but adapt.
One of the videos that we’re planning is almost like a parking attendant that comes and puts a sticker on people called “the disabled fun police”. If somebody’s enjoying themselves, they come along and tell them “You can’t be doing that, you can’t be baking a cake!”. I’ve had comments like “you can’t have cognitive impairment because you got a degree!”.
Don’t feel bad about spending time doing things you enjoy because if you are less stressed then your mental health is better.
If your journey to diagnosis could have been different, in what way would you have wanted it to have been different?
Being diagnosed as a child so that it would have been understood, so I hadn’t been labelled “lazy”. I think that’s the biggest one really. I was told by a drama teacher not to re-take drama A-level because my “temperament wasn’t cut out for it and I didn’t have the stamina”. I did the book The Artist’s Way by Julia Cameron during lockdown which is about rediscovering your creativity. One of the tasks is to write a letter that you don’t send to somebody who damaged your creativity and I wrote a letter to her. I was like “I did end up doing drama and had a theatre company for ten years(!)”. I would have wanted to have not got that “lazy” label. It’s really important to understand when children have things going on, that they’re not seen as “lazy” as it’s part of their condition.
Thank you to Vicki for answering our questions!
Follow Vicki on Instagram @spoon.moon.wolf and her spoonie community page @theresawolfatmydoor
Interview published 30/07/2021
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!