How to cope with a complex condition

Complex condition: endometriosis

Complex health conditions have many layers. Often the focus is on the diagnosis and treatment of a person's physical symptoms, but many complex conditions can also impact mental and emotional wellbeing. 

Chronic conditions, pain conditions and some hormonal conditions fall under this category; they can not only affect your quality of life physically, but they can also affect your social life, your confidence, how you feel about your body, your future and your relationships.

This month is Endometriosis Awareness Month. We spoke to Jean Hailes clinical psychologist Gillian Needleman about the mental and emotional impacts of endometriosis. 

Much of Ms Needleman's advice can be applied to other complex conditions too, so read on to learn how to navigate the complexities and how to best manage them. 

The long road to diagnosis

Endometriosis, also known as 'endo', is a condition that affects a woman's reproductive organs. It occurs when cells similar to those found in the lining of the uterus – the endometrium – grow in other parts of the body, usually in the pelvis. About three out of four women with endometriosis have pelvic pain and/or painful periods. Read more about the symptoms and causes of endo.

Currently, it takes an average time of 7-9 years for adult women to be diagnosed with endo, from their first visit to a doctor about their symptoms, to diagnosis. In adolescent women, the average diagnosis time is even longer: 8-10 years.

Ms Needleman says this lengthy time means women with undiagnosed endo often cycle constantly through a pattern that impacts not only their physical health, but their mental and emotional health too.

"What this often translates to is years of feeling confused, frustrated, doubting yourself, sometimes leading to depression or anxiety," she says. "Often a woman will know there is something wrong and she'll visit the doctor, but for various reasons, she might not get the support she needs.

"A doctor, or others you may have spoken to, may tell you to not worry about it – your period pain or symptoms are 'a regular part of being a woman' or that 'it's normal to feel pain'. Your experience is dismissed and you try to adjust to the situation." 

Symptoms might settle, and time may pass before a woman is ready to seek help again. When pain gets particularly bad again, they visit the doctor again – and may repeat this cycle multiple times.

Fronting up time and again to medical appointments – and being dismissed – can take an enormous amount of courage, confidence and emotional energy. Ms Needleman urges women with symptoms that are affecting their daily life to find a GP who listens to their needs and hears their concerns.

When women eventually get a diagnosis, this can bring a range of feelings, from relief to grief, to anger. "But the more we talk about these conditions, the greater the awareness and the shorter this diagnosis time and silent suffering can be," says Ms Needleman.

Seeking extra support

When to seek extra support

If you have a complex condition how do you know when you might need some extra support?

"It's important for every woman with a complex condition to get to a place where she understands her condition thoroughly and understands her body," explains Ms Needleman. "Every woman and every condition is unique, so being aware of what your red flags are is crucial in knowing if you are coping well or need additional help."

There is a whole range of physical or medical alerts/flags for different health conditions, but on a mental and emotional level, these alerts can be:

  • higher levels of anxiety and stress
  • feelings of hopelessness, helplessness, depression and gloom
  • being unable to stop thinking about your condition, your body or your symptoms.

"If you are feeling these emotions, or if someone you've talked to about your condition suggests it, I would encourage you to seek extra care," says Ms Needleman. 

"Find a psychologist you can talk to, discuss with your GP how you can better manage your condition, and book an appointment for a review with a specialist."

Dealing with endo in your daily life

Endo is a painful condition – the pain can be so severe it can force women to take days off school or work. This loss of control and not being able to forward-plan their life can feel very isolating for a woman and increase feelings of anxiety, says Ms Needleman. "When planning for future events or social occasions that are locked in, you just hope you're going to be okay, you hope your symptoms will be manageable on that particular day," she says.

"Women feel very misunderstood and will constantly ask themselves 'is it really as bad as I think it is?' There is no way of showing someone else your exact pain experience, and no way to measure it precisely, and this can be difficult to deal with."

Other symptoms of endo can be embarrassing for women to bring up in conversations, or are taboo-type topics. "Heavy bleeding and painful sex can be really hard to talk about," says Ms Needleman. "The experience of endo is deeply personal and sensitive."

Medical team, working together

How to cope: build your team

Ms Needleman encourages women with complex conditions to build "a great team" around them. This includes:

  • yourself (making decisions and choices that put you and your health first)
  • your personal supports (eg, women going through a similar experience, women with the same condition as you, friends, family) 
  • your professional supports (eg, your psychologist, physiotherapist, dietitian, naturopath)
  • your medical advisors (eg, your GP, gynaecologist, surgeon or other specialist). 

"Every person in your team has an important role to play in supporting you through the different aspects of the health condition," says Ms Needleman. "When things get tough, you can go to a member of your team and get the right support."

Nearest and dearest

Another layer of having a complex health condition such as endo is that it can spill over in other parts of your life, affecting your relationships and those closest to you. The condition itself may become a point of conflict in a relationship, perhaps because of confusion, frustration or miscommunication. 

"Often women will say to me 'my partner tries to understand, but they just don't really get it'," says Ms Needleman. "Navigating relationships is a common issue, and it can be really tricky, how to communicate to someone who hasn't experienced anything like what you're going through."

Taking your partner to medical appointments may be a good way to increase their understanding of your condition and the symptoms you are experiencing. It may also be helpful to think about how they can best support you during difficult times and explain this to them. 

Ms Needleman says it is important your partner can separate you, as a person, from the pain and symptoms you experience. The pain – or the effect it may have on how you feel about your body – may mean your desire for intimacy can be low at times. 

"Seeing pain as separate from the person, means one can be frustrated at the pain, but not the person, and helps your partner to understand that what is happening is not personal rejection or disinterest of them," she says. 

Read more about how endo can impact relationships and sex.

Pink dots

Future planning 

For women who hope to have children in the future, having endo or another hormonal condition such as polycystic ovary syndrome (PCOS) can pose a double challenge: not only are you dealing with one diagnosis, you are also faced with potential difficulties with your fertility as another symptom of your condition. Also, when you are diagnosed as a younger woman, you may feel compelled to think about this part of your life well before you may have otherwise.

For women who have future or present hopes for fertility, and who have a condition that may affect this, it's important to get the facts and professional advice that's right for you. Read more about endo and the impacts on fertility.

Lifestyle changes: taking back some control

Ms Needleman says all women, but particularly women with complex health conditions may benefit from making healthy lifestyle choices. "Aside from the positive impact that healthy living may have on your health condition, anyone who's engaging in exercise and healthy eating is going to be healthier mentally and emotionally than they would be otherwise." 

There is no direct evidence that lifestyle reduces the severity of endometriosis, but it has been shown to have a positive impact on other complex conditions such as PCOS. "When you have a complex health condition, being physically healthy may be even more important," says Ms Needleman. "Women who are being active, eating well and managing their stress as much as they can are giving themselves the best possible chance for being the healthiest and happiest self they can be." 

It may also feel empowering to gain some control over what can sometimes feel like an overwhelming and powerless situation. When you take matters into your own hands, you are reminded that some changes and choices are within your reach – and that can have real benefits.

Listen out for your 'inner voice'

As her parting advice, Ms Needleman reminds us to pay attention to what our bodies are telling us.

"Often your body is communicating something to you and I really encourage women to listen to their bodies, to their inner voice, and take the next step in seeking help," she says. 

She says if you have a complex condition, it's also important to put yourself first; by knowing what self-care strategies work best for you, and ensuring they're part of your routine.

"All too often women put others ahead of themselves and ahead of their own health," she says. "You may tell yourself you can just get through the day, the week, the month; suddenly you get busy with other things in life or something 'more important' pops up – there are so many barriers that women face in seeking the care that they need.

"Remember, you don't have to go it alone – help is available."

Read more about ways to support your mental and emotional health on the Jean Hailes website.

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