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Alliance Party leader Naomi Long lifts lid on illness she hid for 20 years, in hope of helping others

Naomi Long pictured in her Assembly office in Parliament buildings last weekk. Picture by Hugh Russell

For over 20 years Naomi Long has been in the public spotlight with her political career taking her from Belfast city council chambers to MP to Alliance party leader.

Throughout this period she was suffering from an “incredibly aggressive” illness which she kept secret from even close friends.

She has chosen to speak publicly for the first time about life-changing surgery in the hope of breaking the “stigma” around women’s health and to encourage more women to seek treatment. 

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Naomi Long is not known for holding back.

Her chief press officer often tells her to "take a breath" during television interviews and she confesses to being a social media addict who can't sleep at night "if somebody's wrong on the internet".

But when the 45-year-old Alliance party leader collapsed in a TV studio earlier this year during a live debate in the run-up to the Westminster election, she was uncharacteristically quiet about the incident.

Shrugging off concerns about her health after the May broadcast, the former east Belfast MP claimed she was "grand now" and put it down to feeling faint in a hot studio.

The reality was she had just postponed a major operation and was in excruciating pain from an aggressive gynaecology-related illness, endometriosis, that has plagued her since her teens.

The condition involves tissue normally lining the womb growing outside it and can have a huge impact on quality of life, causing heavy bleeding and long-term pain. It can also lead to infertility.

We've never met and the confines of her Assembly office in Stormont's Parliament buildings are probably the least conducive to discussing an illness she kept secret from close friends for decades.

While she went public in August with a brief Facebook post revealing that she had "aggressive endometriosis" and was going for "routine but quite big surgery", she has never spoken publicly about the physical and emotional impact of undergoing a full hysterectomy or battling a chronic condition.

From the off, the East Belfast Assembly MLA insists on how "private" she is and we agree if any questions are too personal she'll bypass them.

"Even though I am in the public eye, when it comes to health it's something I find quite difficult to talk about. I've got that 'only child' thing going on as well where I am quite private naturally and because so much of your life is exposed those things that are private become more valuable - so I don’t really talk about them," she says.

For the next 90 minutes however - we had originally scheduled an hour - nothing appears to be off-limits as she reveals "a burden" has been removed but admits the surgery affected her mentally as it means she will never have children.

"One of the things that surprised me when they mentioned hysterectomies was that I was quite emotional about it. I hadn't really thought about that whole part of my life, that being the end of it. It's odd that something that has cost me such hassle my entire adult life - that I should then feel so emotionally attacked at the same time.

"On balance I felt it was the right decision to make, at 45 I wasn’t intending to start having a family. Michael (her husband, the Belfast city councillor) and I decided pretty early on we didn't want to have a family...it never happened but now I know why. Maybe if I had known looking back it might have been different. As it happens we're happy with how things have turned out. We're content."

Despite suffering from extreme tiredness since the major operation in August, the former Lord Mayor's energy levels seem to be on a high on a miserable November day as she enthuses about being 'pain free' for the first time "in years".

She has taken the decision to speak so openly about the 'silent illness' to encourage other women to seek help after she spent 20 years being misdiagnosed - to the point she thought her condition was "all in head".

"At one point I was taking time off work twice a month. I was sent for lots of tests, colonscopies, endoscopies, allergy tests etc. The only thing I found out was that I was allergic to cats. It was then I started to think was it all in my head and that I was blowing the pain out of proportion."

With her trademark ginger hair, Long even jokes about redheads having a lower pain threshold.

Naomi Long Alliance Party and her husband Michael on the way into a polling station in Belfast. She has told the Irish News that he was the only person who knew about the extent of her illness. Picture by Hugh Russell.

"I thought it was me being dramatic. The symptoms are very similar to Irritable Bowel Syndrome (IBS) or a food allergy, you get a lot of nausea, bleeding, stomach cramps and there was the assumption it was IBS."

After the barrage of tests she was finally sent to the Ulster hospital in Dundonald where they discovered she had two massive cysts, "one the size of a grapefruit and one of the size of an orange" on each ovary that had been pushing on other organs.

"The cysts were removed and I was told I had endometriosis. I was 38. I was relieved to get diagnosed as it was finally an explanation. I had lived my whole life with this. I felt embarrassed at times because I had to cancel meetings at short notice or couldn't go out with friends. Sometimes I thought I must have looked like an awful fraud, I was constantly complaining but they could find nothing wrong."

Long believes there is a "huge stigma" attached to talking about gynae and fertility-related problems - even among women themselves - and says it is something we need to break down as lives are being put at risk.

"The number of women have come up to me to reassure me that having a hysterectomy was the best thing they ever did is unbelievable. But it's like a secret among a group of women who've had it - as nobody else talks about it."

Her desire for privacy and the delayed diagnosis led to several emergency admissions to hospital, including St Thomas's in London after she collapsed in her parliamentary offices in 2013.

Prior to this, she had experienced a year of "chaos" in which her offices were fire bombed in the wake of the loyalist flag protests and received repeated death threats.

"Everything was happening at the one time. I was in St Thomas' for four days and I didn't want anyone to know. I was discharged and the doctor had said I needed bed rest.

"But I came home and did a lunch for a cancer charity and that evening my office was attacked. I collapsed again and one of my colleagues wanted to call an ambulance. But I said we've had the police, the fire service and protestors outside this office, I don't want the ambulance service."

Against this backdrop, she received a diagnosis of skin cancer but one which was treatable. While she spoke last year about her disease to raise awareness of one of the most common cancers in the north, she still felt unable to talk about the toll of endomestrosis.

"I had kept everything very quiet, very private, even my best friends weren't aware of it. The only person who knew what I was going through was my husband."

"Endometriosis and the pain that goes with it becomes your normal. It really was when it became so unbearable that things changed. You do wonder at times if you're the only person with it. But I have battled this with most of my adult life."

A former pupil of Bloomfield Collegiate, Long remembers herself as the "sick bay kid" at school when she got into teens.

"I've had it right from my teens. I remember when I was doing my GCSEs I used to have excruciatingly bad periods...I had to go in with hot water bottles and tablets.

"I became accustomed to a certain level of pain which became my baseline. I’ve only realised since my surgery how much pain I was in beforehand because it was just standard...and that's why I decided to speak out about this. There are lot of women out there who presume that being in pain or having really heavy periods is normal and something you have to put up with - and it really isn't."

The response from other women suffering from similar conditions since her social media post in August has been "overwhelming", according to Long

But she warns more investment is required in a speciality dominated by massive delays for vital diagnostic tests, such as laparoscopies, a key-hole procedure which can give a definitive diagnosis of a wide range of conditions, including endometriosis.

The surgery can can also be used to remove a damaged organ, such as an ovarian cyst.

Naomi Long and her husband Michael after she was elected as the new leader of the Alliance party in October last year.

In Northern Ireland, the laparosopy waiting list for women experiencing severe symptoms but who are not not classed as "emergency" can be up to five years. The alternative is to pay £5,000 for the procedure to be carried out privately by a NHS consultant.

"I don't know if it's because it's women's medicine but it's not given the kind of status and priority when it comes to dealing with it. There is this presumption this kind of 'natural stuff' comes with pain and discomfort. But there's nothing normal about bleeding for 15 days or if you are in pain to the point where you can't function, that is not acceptable. There are things that can be done. I think there are a lot of women who go through the majority of their adult lives incapacitated," she added.

Last autumn, Long felt "really dreadful" and went to see her GP. A blood test confirmed that 'antigens' or markers for ovarian cancer were raised and she was given a red-flag referral to see a consultant.

"Thankfully I didn't have cancer but it was big setback. I had developed another two large internal cysts. The option for me was to have another laparoscopy or a hysterectomy, which was bigger surgery with a longer recovery time.

"The decision made itself. With the hysterectomy I would know it was over while with the more minor surgery I could have another 10 years of pain. It had become so debilitating at that point."

A surgery date was set for after Christmas but following the collapse of power-sharing in January and the announcement of Assembly elections two months later, Long decided the "time wasn't right" and postponed the operation to remove her womb.

Despite her husband begging her to go for the surgery as her health deteriorated to the point she contracted bronchial pneumonia in March, she postponed surgery again with the advent of the Westminster elections.

When asked about her mental health throughout the election period, she admits that she became "very down".

"I was on constant pain medication, five to seven tablets in morning and then throughout the day. I used to say if you shot me I would have rattled," she joked.

Long says since the massive surgery, her life has been "transformed".

"It was the best decision I ever made. The hospital staff were outstanding. I had never had major surgery, even with the skin cancer.

"When I woke up after the operation it was the first time I was pain free for years..It was like a burden had been lifted."

While still getting her four hours sleep a night, she no no longer requires her cocktail of daily painkillers.

Despite the political stalemate, the east Belfast Assembly member said she's "fighting fit and ready to go".

She has also reconnected with her tens of thousands of social media followers.

"I also have my fair share of trolls I have to say, I actually told some of them when I was going off sick, I hope you don't miss me. In fairness some of them said, I hope you get better soon, we enjoy having a wee row with you.

"I am just throwing myself into things and enjoying it."

Naomi Longbegan her political career at Belfast City Council, where she served as Lord Mayor. She is pictured Hillary Clinton pictured at the re-opening of City Hall in 2009

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