Name: Marie
Age: 44
Gender: Female
Relationship status: Single
Family Situation: no children
Employment: Unemployed since August 2024 (due to illness including MCS)
Residential Status: Living with family
Geographical residence; Belfast
I have been living with difficulties around exposure to some chemicals and fragrances for approximately 18 years. This became worse in work since July 2023 when some colleague’s behaviour changed and I was increasingly exposed to strong fragrances resulting in some very dangerous situations for me. My attempts to avoid the strong fragrances in work had little success and when requesting support from managers, I was always told they couldn’t help.
My condition drastically deteriorated in work over approximately 8 months and paramedics had to be called at least 10 times as a result. I was becoming more desperate for help and understanding but either people didn’t understand or didn’t care be it managers in work or doctors and medical staff.
Medical staff, particularly nurses, are at best dismissive of my condition and I overheard more than one conversation between nurses in A&E say that ‘it was all in my head” or it “was made up” because they had never heard of such allergies/conditions. Even after I found the MCS Aware website and would show it to medical staff when I went to hospital, nursing staff would ignore it, one rolled his eyes and told a colleague I was being difficult. (I had encountered the same nurse on a previous visit to A&E which resulted in an overnight admittance. It would have been a longer stay but I was tired of being treated so poorly and wanted to go home).
Nurses would treat me as though I was stupid for even suggesting I couldn’t tolerate strong fragrances and would try to find ways to discredit or disprove what I was telling them. It seemed that as my condition didn’t fit into a box they knew of, that they refused to acknowledge it. I had been admitted overnight to the short stay ward of A&E. The doctor who admitted me was very caring and understanding. When he came in the following evening for his next shift, he decided I would stay another night. During the handover discussion for medical staff, I heard them discussing me. One of the nurses didn’t believe the doctor when he explained my condition. After the handover was completed, the nurse got an aerosol air freshener and sprayed it generously, it wasn’t long before I became very ill and my FND reacted. With the spasms I experience I fell out of the bed landing hard on the floor, I was hurt but not badly injured. The doctor was furious but the damage was done and despite his assurance that it wouldn’t happen again and that I needed to stay in hospital, I wanted to go home. I became so anxious that the doctor eventually agreed it was safer to let me leave.
On one visit to A&E via an ambulance, I was being triaged and explained MCS to the nurses as best I could. My larynx is tight so speaking is difficult and I injured my leg and couldn’t walk. The nurses decided that I could wait in the very crowded waiting room to be seen. When I explained the dangers to me of being there, the nurses told me I didn’t have a choice and they would “stick me in a corner near the toilets”. I decided it was too risky especially as I wouldn’t be able to ask for help if I needed it so I would just go home despite being unable to walk. The nurses were furious with me and tried to call my bluff (words they used when they thought I couldn’t hear them) by starting to wheel me in a wheelchair out to the waiting room. I became very anxious and distressed trying to explain so the nurses left me in a corner in triage telling me they would speak to the nurse in charge but that they wouldn’t be happy with me.
The experience was so bad that I later wrote to the hospital to raise a complaint and that the attitude of nurses got worse when I tried to advocate for myself. A few weeks later, the nurse in charge phoned to apologise and assure me it wouldn’t happen again. Thankfully, I haven’t needed to attend A&E in a while to test it.
Most doctors weren’t interested for the same reason though I did find most paramedics much more understanding and curious.
One paramedic suggested that I contact Allergy UK to see if they could offer any help and they in turn recommended that I contact MCS Aware.
I found the MCS Aware website and contacted the charity. They had some material and information for me to look through. They also wrote a letter to my employer to help them understand and hopefully find ways to help me.
More importantly, when I found the website and began reading through the information and personal stories, I found an indescribable sense of relief and validation. Finally, after so many years of struggle and of being dismissed, I had a name for the condition I’ve lived and struggled with and that there are a lot of other people living with it to varying degrees. Knowing that there is evidence that the condition exists and that it’s not all in my head or made up, was amazing.
Until the changes in colleague behaviour, my condition was managed pretty well with only occasional serious flare ups. My sensitivity to some chemicals/fragrances is not as severe as some but the reaction it triggers in my body is very severe as it seems to work with another condition I have called functional neurological disorder.
I worked for my employer (a large retailer) for over 18 years before ultimately being dismissed in 2024 because of my sensitivity to strong fragrance and how ill it had made me. I kept a record of the exposures in work so I could show managers and to help me identify any significant triggers and find solutions but the managers weren’t interested in it or in trying to help in a meaningful way.
Unfortunately, there were 3 colleagues in particular who worked on my floor and wore very strong fragrance and although I did all I could to avoid them and there were restrictions placed on my movements in work they did not care and had no restrictions on their movements. If they came to my area of work for any reason, I became ill on every shift (often seriously) but managers insisted they couldn’t raise awareness or ask colleagues to be mindful. There were other colleagues who used strong fragrances or kept them in their pockets to use when they wanted. To minimise my exposure, I could no longer use the staff lifts to go up/down through the 6 floors of the building, I had to use escalators and stairs which wasn’t always easy. I could no longer use the staff canteen so had no way to store or heat up food, I had no access to fresh water etc or access to the other facilities on offer to staff.
Another issue I had was a colleague vaping in the store staff areas. It didn’t happen often but on one occasion I encountered the vape in a stairwell and subsequently became ill. Despite vaping being against company policy, management saw no need to look into the vape instances or issue a reminder on company policy. It was another danger for me but the managers didn’t see it as important.
For many years, I had a very active life. I ran a festival group for over 20 years, organising multiple events a year and supporting other groups. I was part of the board of directors of a local charity/community group for around 15 years, serving as chairperson for 4 years. I was a community and political activist. I helped to run a food bank. I’m the main carer for my parents and I used to frequently take my niece and nephew out for the day.
As a result of the damage caused by so many frequent exposures to fragrances in work, I was no longer able to carry out most of these. I stepped down from the charity, pulled back from festival, community and political activities and the part of the food bank I ran was closed. I can’t take my niece and nephew out as often as I used to. These days, I rarely leave the house except to walk my dogs.
Contacting MCS Aware was a life changer for me. Just going through the information on their website was a huge relief. I always knew that my condition wasn’t in my head as so many medical staff tried to assert, but seeing the information and the stories on the website was amazing. The more I read, the more I wanted to read and the more validated and accepted I felt. I now had written details to help support me in various situations and while it didn’t matter to most nurses I came across, my GP became more supportive and some A&E doctors took a little time to understand it better.
I have already mentioned a visit to A&E where I was told I was being difficult. After that happened, I was later seen by a doctor, one who had heard of MCS but didn’t know much about it. After speaking to me initially, he went away and used the MCS Aware website to get a better understanding of MCS and what I was experiencing. When he came back to me, the doctor was so understanding and helpful. He realised that A&E was a dangerous place for me to be so I wouldn’t be there if I didn’t absolutely need to be and he made sure I was in an area that wasn’t crowded and where there were medical staff nearby to keep a check on me. I suddenly felt much more at ease and accepted and the nursing staff in the area were so helpful. I did run into an issue with a porter who took me to X-ray wearing a lot of strong fragrance. This time though, when the nurses saw that I was starting to react, they quickly got the doctor and they helped me through it, treated me and got me out of the hospital as soon as it was safe. In this instance particularly, the MCS Aware website was invaluable. I have tried before to get medical staff to look at the website but most aren’t interested. Those who do look at it, even briefly, get a better understanding of MCS and it’s impact and in turn treat me better.
