Toxicity of Positive Thinking for people suffering from endometriosis
“Other people have it worse than you! You should be thankful for the good things in your life/Things could be worse”. How many times have you heard those frases? While recovering from extensive surgery, while struggling to function in day to day activities, while living in pain, while struggling to conceive, while trying to get over pregnancy loss, while trying to convince doctors that your pain is real, while your relationships fall apart, people find it appropriate to “comfort” you by burdening you with positive incentives. Positive thinking and the restless pursuit of happiness has become a purpose in itself and a sign of a well adjusted individual. On the other hand, acknowledging negative emotions and difficult situations is considered something to be avoided at any cost.
People living with endometriosis struggle with chronic pain and infertility. A study from 2021 underligns the impact of endometriosis on the quality of life. The symptoms associated with endometriosis: chronic pelvic pain, dysmenorrhea, dyspareunia, dysuria, dyschezia, chronic fatigue, and infertility, have a substantially negative impact on the physical, mental, sexual, and social well-being of affected women (7 ). Endometriosis has been shown to hamper educational attainment, hinder work productivity, alter career choices and success, impair social life and activities, affect family choices, induce strain in personal relationships, negatively influence mental and emotional health (7).
A positive take on life and trying to make the best of a bad situation can be a very efficient coping mechanism. Considering all the hardships endometriosis brings to a person’s life, putting a positive spin on things is a luxury not many afford. Positive thinking is taken to the extreme and by being pushed onto a person who is suffering, can cause damage in the long term. People are urged to ignore the bad things they are feeling and to focus only on the positive. It is suggested that the only way to cope with a bad situation is to put a positive spin on it and not dwell on the negative. This is a very unrealistic and toxic suggestion for someone who is experiencing chronic pain.
Chronic pain is defined as pain that “persists beyond the normal tissue healing time, which is assumed to be 3 months” (5). The pain can cause structural and functional alterations in the nervous system so that it ceases to be a symptom of the initial cause and becomes an entirely separate condition. Studies indicate that people with chronic pain are more likely to develop psychological disorders than those not affected by chronic pain. The likelihood for suicidal thoughts, depressive disorders and suicidal attempts is much higher among people living with chronic pain (5). Chronic pain can alter and remodel the nervous system causing functional changes in neuronal receptors. Patients can develop allodynia – pain due to a stimulus that does not normally provoke pain, central sensitization – amplifying the response to pain, hyperalgesia – Increased pain sensation from a stimulus that normally provokes pain. Remodeling of the nervous system has been demonstrated in several studies and in different types of chronic pain. It has been suggested that as pain persists, a plastic, time-dependent reorganization of the brain can occur, with the potential for becoming irreversible (5).
Multiple mechanisms underlie endometriosis-associated pain including nociception, inflammation, and alterations in peripheral and central nervous system pain processing. As also occurring in other chronic conditions, pain in endometriosis is often associated with psychological distress and fatigue, both of which may amplify pain. Factors such as psychological and physical stress, hormone status and various coping mechanisms are known to influence pain perception.
Now, considering all the above, try saying it again: “Other people have it worse than you/ You should be thankful for the good things in your life/Things could be worse”. Toxic positivity is making the person who is suffering feel shame and guilt for feeling something that is very normal considering their situation. Negative feelings have to be dealt with openly and honestly. Hiding them and pretending things are not that bad only causes a disconnection from reality and an inability to process trauma adequately. Because, yes, we are talking about trauma. Trauma of undergoing multiple surgeries, trauma related to pregnancy loss, to complications due to the extent of the disease. Depression, anxiety, need to be addressed and not swept under the rug.
Studies show that people who are in touch with their emotions and process them correctly are more likely to lead a healthy life (2). We need negative emotions so we can learn and grow. We need to cope with the pain and the suffering, not to ignore and dismiss them. Extreme positive reinforcement stems from an over evaluation of positive feelings and a tendency to undervalue negative ones. We need to work through the negative issues we are facing in a healthy way.
Women who are dealing with infertility and/or pregnancy loss are often told to “look on the bright side of things” or that “everything happens for a reason”. Toxic positivity means shutting down anything you have to say about the negative experience, dismissing one’s right to feel angry and all the negative emotions that come with the situation. It has been shown by studies that women dealing with infertility often doubt their own identity and purpose because they are not able to fulfill the role assigned to them by society. Emphasising motherhood for women with conditions affecting fertility and/or menstruation may result in these women feeling that they have failed in their role as a woman (8). These are feelings that need to be explored, discussed, not dismissed or hidden under a closed statement like “things were meant to be this way”. Although difficult, the process of facing negative emotions has great benefits in the long term. Acceptance has been linked with greater psychological health, which may be due to the role acceptance plays in negative emotional responses to stressors: acceptance helps keep individuals from reacting to-and thus exacerbating-their negative mental experiences (6). For people just trying to make it through the day because of the pain, because of doctors dismissing their pain, or because of a pregnancy loss, being told that they need to look on the bright side of things can actually be a cruel thing to say.
When dealing with a very difficult situation, like coping with endometriosis and everything that the disease means, people need to have a critical view of their reactions and feelings. The “germ” of positive thinking can affect our behaviour without us even realising it. Toxic positivity is when:
- You put on a brave face and act like everything is ok when in fact you are a in a lot of pain
- You minimize your pain thinking that it will eventually subside if you don’t pay it much attention
- You feel shame and guilt for having negative feelings and for suffering
- You dismiss other people’s feelings by urging them to be positive and to act like happiness is a choice
- Making your experience an example for dealing with a difficult situation and implying that anyone can do it
Everyone’s experience is profoundly subjective and personal. Instead of giving advice, try to listen and support the person who is trying to share their suffering. Remember that the pain is real, even though there are no physical signs, even if the person seems healthy. Take into account that years of living with pain and undergoing multiple surgeries can leave a person traumatized and unable to see beyond their own grief. Be aware that trying to conceive or losing a pregnancy when others are already enjoying their families is not something that can be soothed by saying that “things could be worse/it was meant to be like this/you should be grateful for what you have”. Instead try saying “IT’S OK NOT TO BE OK”.
- The Ability to Regulate Emotion is Associated with Greater Well-Being, Income, and Socioeconomic Status – Stéphane Côté, Anett Gyurak, and Robert W. Levenson – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175372/
- Mechanisms of pain in endometriosis – August 2016 –https://www.researchgate.net/publication/305823902_Mechanisms_of_pain_in_endometriosis
- Stress Induced Neuroplasticity and Mental Disorders – https://www.hindawi.com/journals/np/2017/9634501/
- Long-Term Consequences of Chronic Pain: Mounting Evidence for Pain as a Neurological Disease and Parallels with Other Chronic Disease States – Pain Medicine, Volume 12, Issue 7, July 2011 – https://academic.oup.com/painmedicine/article/12/7/996/1840819?searchresult=1
- The psychological health benefits of accepting negative emotions and thoughts: Laboratory, diary, and longitudinal evidence – https://pubmed.ncbi.nlm.nih.gov/28703602/
- Impact of Endometriosis on Life-Course Potential: A Narrative Review – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7800443/?fbclid=IwAR3B41rK0UUaah4MAccCci83pdzUasvJgEuc1KHvi4988G1SibITKWzY5H8
- The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity – https://journals.sagepub.com/doi/full/10.1177/0959353520930602