Emma

Next in our interview series ‘Your Behçet’s Stories’ we heard from Emma who told us about her journey to diagnosis, her love of nature and hiking, how she manages her condition with running her business, and much more. Thank you to Emma for sharing your story with us!

Emma was diagnosed with Behçet’s in February 2022 and had a long journey to diagnosis. You can mostly find Emma outdoors, hiking in the Peak District. She also loves reading and photography. She is self-employed and her work is centred around advocating for and supporting other people with chronic and invisible illness who also want to grow and run their own businesses. 

When did your symptoms first start and how did you eventually get diagnosed with Behçet’s?

My Behçet’s symptoms started when I was 18. They began as mouth ulcers, but nothing that Bonjela could sort. My whole face would change shape and I would be left unable to eat or speak. There were times when drinking water would feel like putting acid in my mouth. In Ireland, I went to a few different doctors and consultants, but no one could pinpoint what exactly was going on. I’d always had sensitive skin too and would get strange marks and lesions but never knew something called Behçet’s existed.

I was initially tested for Coeliac Disease, HIV, and even had biopsies where they would take out parts of my mouth ulcers. They wouldn’t refer me to immunology as I was “too young” (actual sentence on my medical records). Nothing came back as out of the ordinary, so that was where my journey with Prednisolone began. To be honest, after a couple of years of investigation and being very ill, I kind of gave up and just used Prednisolone as a method of treatment.

I moved to Australia as travelling there was always a dream and after a particularly bad flare up there where I had to be given morphine for the pain, a doctor did suggest Behçet’s, but then quickly dismissed the idea as I didn’t have connections to a Mediterranean / Silk Road heritage. I ended up not bothering going to more doctors as I found the experience brought on heaps of anxiety. To this day I still have panic attacks when I visit a new doctor after years of medical gaslighting. I also learned how to live with the pain, which is quite sad. It was only in November of 2021 when my partner asked me to give it one more go with doctors, as I was beginning to suffer more with joint pain and inflammation, eye inflammation and fatigue on a daily basis. By pure chance, there was a new GP at my practice who specialised in autoimmune/autoinflammatory diseases and as soon as he looked at my history I had an urgent appointment at the rheumatology department at Salford Royal. My first appointment was in November 2021, and based on my symptoms and positive pathergy test, I was diagnosed in February 2022, 12 years after the symptoms began.

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

The most difficult part is definitely the unpredictability of the disease. It’s those first few minutes of waking up in the morning, not knowing how your body is feeling, or randomly feeling multiple mouth sores pop up as the day goes on. You eat while you can before the pain gets too bad, but then have to worry about what you’re eating, because what if that makes it worse? Medical gaslighting is a massive issue and I was once told: “Well, it’s been 10 years and you’re not dead so whatever it is can’t be that bad!”.

Since diagnosis, I would say one of the most difficult parts is communicating how serious and debilitating the disease is to people in my life. As someone who did a very good job of hiding the pain I have been in for so long because I didn’t know if it was real in a way, it feels strange to finally have a name, have medication and be able to speak about it.

You mentioned to us that you run a business that helps people with chronic pain and illness, which sounds very interesting. Would you like to tell us more about that?

Yes, I am in love with what I do and very grateful to be able to do it! I am a business mentor for self-employed people with chronic and invisible illnesses. My mission is to help them grow and run businesses that work with and not against their symptoms, so I really focus on pacing, planning, boundary setting, avoiding the comparison trap and toxic productivity – it’s business wellbeing for self-employed chronically ill people.

There is also a big emphasis on community and having fun in our businesses to reduce isolation, so I am planning on launching a membership that will have coworking calls, group mentoring, a book club etc… and I have a newsletter called The Chronic Craic.

A lot of clients I work with find the usual business mentoring methods to be quite full-on and not understanding of chronic illness, but they also want to enjoy running their business, which makes sense. It started from my own experience of going self-employed and driving myself to burnout, so if I can help someone else not make the mistakes I did, I’m happy. I also do part-time Virtual Assistant work and am very lucky to have amazing clients on both sides.

We noticed that you work flexible hours which can really suit someone with chronic illness. How else do you manage your work with having a chronic condition like Behçet’s?

I recognise my baseline for tasks, so I know exactly how much energy is needed for all the tasks I do and I rest when I need to. I plan by the week, but leave plenty of buffer time and white space in my calendar.

My version of success isn’t about financial gain and having lots of material things. I don’t know how it could be, after going through what I have been through. My version of success is working around my life and my flare-ups. It’s going for a walk when I have the energy because that will make me feel good, which means I’ll feel good showing up for my business, friends and family. It’s being able to rest when I can for an afternoon. It’s being in control of my own schedule and having the flexibility to move things around. With Behçet’s in particular, if I feel mouth ulcers coming on that affect my ability to speak I will clear my diary of calls and just use email instead.

In terms of self-care, what things do you find the most helpful in managing your Behçet’s?

Nature and being outdoors is my main form of self-care, so lots of hiking and camping (when I can) or walking my dog, Dylan. It’s what gets me through the Behçet’s flare-ups, knowing that it won’t last forever and I am extremely lucky and grateful to be able to do those things when I am feeling well.

If I am not feeling well enough to hike I love to read. It’s a great distraction. My fiancé is my rock and my best friend. He has seen me at my absolute lowest and has still made me smile. If it wasn’t for him, I probably would not have my diagnosis. The work I do is also a form of self-care as I love connecting with other spoonie business owners and have made some amazing friends. 

What advice would you give to someone newly diagnosed with Behçet’s?

When I was first diagnosed I made the mistake of thinking that all my questions were answered and that I would be given one tablet and I’d be fine. Of course, it is validating and great to have a diagnosis because it means that the options for treatment are opened up to you, but just remember that it might still take some time before you find the right one.

Listen to your body more and know that it’s okay if the most you can do in a day is blink.

You’re allowed to be angry, but try to remember as much as possible that you have overcome so many flare-ups in the past, and you can overcome this one and the next.

Advocate for yourself and others by speaking about Behçet’s and educate your family and friends – you never know, someone they know might have symptoms and your story could help.

Thank you so much to Emma for answering our questions!

Interview published 19/05/2022

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!