Hayley
Next in our ongoing series ‘Your Behçet’s Stories’ we heard from Hayley who told us how Behçet’s has affected her career, her experiences of getting reasonable adjustments and help from Access to Work, how joining a Facebook support group has helped her, and more. Thank you to Hayley for sharing your story with us!
We are looking for more participants for this series so if you would like to take part too, you’ll find the details at the bottom of the page.
Hayley is 51 and lives in Hertfordshire. She loves her job as a social worker in child safeguarding. Her favourite thing to do is to spend time with family and friends. Hayley lives with her amazing husband.
When did you first experience symptoms of Behçet’s and when did you get diagnosed?
Looking back, since the age of 17 I can’t really remember a time without something impacting my health. I had knee pain, mouth ulcers, stomach pain, sensitive eyes, mottled blotchy skin, seizures, headaches and fatigue. Typically, I did not experience all of these symptoms at the same time and never even considered that they might be connected in any way.
In 2007 the mouth ulcers I was experiencing became significantly worse, much bigger and more painful. My face would swell and they would become infected. Neither my dentist or GP had any answers and I was told to use over the counter mouth ulcer treatments. I then began suffering from genital ulcers and my GP diagnosed herpes. The sexual health clinic ruled this out 3 weeks after my swabs were taken. This was a very low point in my life.
In 2010 I asked my neurologist at the time if these ulcers could be a side effect of the medication I was taking. He was the first person to suggest Behçet’s and I was referred to ENT, then rheumatology before being referred to see Professor Haskard in London in 2011. Initially, it was a welcome relief to have an answer, but this was followed by the sad realisation that this was lifelong.
Do you find it difficult to manage your work alongside having a chronic condition like Behçet’s?
Due to Behçet’s I am unable to work full-time, however, my employer has worked with me to enable my individual needs to be met in the workplace. This was a complex process due to the chronic, unpredictable nature of Behçet’s and the requirements of my role. However, I now work part-time and have the support I need in place to enable me to fulfil my role successfully.
Having Behçet’s and working part-time did not impact on my success in progressing to becoming a senior practitioner or furthering my education through higher education to be a practice educator.
I am so grateful that I did not give up on working as this brings me so much happiness and fulfilment.
Have you had to make any other adjustments to how you work, for example, through flexible working or working-from-home? Is there any particular adjustment that has really helped you to stay/progress in your job?
Prior to working part-time and having support in place managing my role full-time was significantly more difficult. I was frequently on long term sick leave which was not helpful to the families I work with, my colleagues, my family, my friends or myself. I am thankful that my employer has been inclusive, sensitive and accommodated my needs to enable me to progress and continue to work by ensuring the right support is in place.
I have been able to work part-time and flexibly using the working-from-home facility which involved me being provided with the equipment and support I need. This included specialist equipment, software, a supportive chair and an emergency fall alert. I now use my wheelchair when I go into the office and this enables me to be in the office longer, more frequently with fewer ill effects. This is great as I love spending time with my colleagues.
Working in partnership with my employer and Access to Work has been fundamental in meeting my needs by providing me with mentoring and funding for a driver and carer. Knowing more about Access to Work at an earlier stage would have enabled me to get support in place sooner which would have been beneficial for all concerned and my emotional health.
Do you find that having Behçet’s, which can be a very unpredictable condition, makes it difficult for you to maintain a social life and make plans with your friends and family?
I am fortunate to have a loving understanding family and friends who understand the impact Behçet’s has on me. My amazing husband and I see our daughters and grandson regularly, which is always fun.
Behçet’s is incredibly unpredictable and my family and friends understand that the plans we make may needs to be postponed, adapted or to go ahead without me. I make realistic plans with my friends, for example meeting over lunch for an hour or going out for dinner – my high rope climbing adventures, bike rides and mountain climbing days are over! I am limited in what I can do with my friends and family, however, I’m thankful for what we can do together. My husband and I enjoy relaxing holidays, sometimes with friends and sometimes just us. Sometimes I get sad that my family have to care for me, then I remember how lucky I am to have them all in my life, and how lucky they are too to have me!
What things do you find to be most helpful in terms of support?
I find Behçet’s Facebook groups supportive. I have made some very close friends through a Facebook group. Some live far away from me but we still manage to regularly meet up. I have a Behçet’s friend in Somerset who I meet midway between us both. We enjoy a night in a disabled friendly hotel room and just sit talking about everything!
I enjoy eating out with my more local friend and our husbands. We are equally understanding and supportive when plans need to change. There is a common understanding of Behçet’s which we just get, and it is amazing to feel so completely understood without having to say anything.
Helping my friends to understand Behçet’s has enabled them to understand my limitations and capabilities.
Do you have any hobbies?
My hobbies are now scrapbooking and crafting, which gives me something to do when I’m not as mobile or able to get out and about. I love keeping ongoing scrapbooks for our grandson to read when he is older. This brings me incredible joy and helps me to recognise all we are achieving in life.
Do you have any advice for anyone who has just been diagnosed with Behçet’s?
Join a Behçet’s Facebook group and ask as many questions as you need to from those with lived experiences. The support is endless and the friendships that develop are amazing.
Join Behcet’s UK and tap in to their support and information sheets which can inform you and your network of what Behcet’s is.
Try not to Google too much – there is a lot of incorrect information out there.
Just know that you are going to be forever explaining to doctors what Behçet’s is and for many doctors you will be the first patient that they have met with the condition. A lot of medical professionals have not heard of it, until they meet you.
Make an application for PIP/benefits if appropriate.
Seek support, if appropriate from Access to Work if you want to stay in work or return to work.
Be kind to yourself.
Thank you Hayley for answering our questions!
Interview published 14/03/23
For information on Access to Work, go to the Gov UK website.
If you’re a member of Behçet’s UK, remember that we have members-only Facebook peer support groups. There is an All Members group plus groups for each region of the UK. Please answer the 3 security questions when applying to a group so that we can verify your membership. Groups are only for members so that we so that we comply with safeguarding legislation and the duty of care obligations that all charities have to adhere to.
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 useful tips for managing your condition day-to-day that you would like to share to help others, or you might like to tell us your story of diagnosis, or about how your Behçet’s has changed your lifestyle or your work life. 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!