Introduction

An invisible illness is a physical or mental illness that others can’t see. These illnesses include a range of energy-limiting conditions that are not visible to the onlooker. Examples of invisible illnesses include fibromyalgia, endometriosis, Chron’s disease, chronic pain, irritable bowel syndrome, myalgic encephalomyelitis (ME), diabetes, lupus, epilepsy, asthma, and arthritis.

There are also many invisible illnesses that are associated with mental health, including depression and anxiety. This post, however, focusses on invisible illnesses that have a biological or physical cause. This post explores the relationship between invisible illness and stigma. It also discusses the direct relationship between invisible illness and the difficulties we face as patients with doctors not believing us about our symptoms. It debates the day-to-day difficulties of living with an invisible illness and the importance of radical self-care.

My invisible illness

My facial pain is an invisible illness. You would not know by looking at me that I a.) have a chronic condition or b.) am in severe pain. It is not noticeable to a stranger that my pain is taking a huge toll on my mental health and stealing my quality of life. It isn’t visible or obvious that I am suffering. The disease that I have exists within the soft tissue and muscle of my face, not on my skin, so I ‘look fine.’ But I am not fine. I live with unrelenting pain.

My experience of living with an invisible illness is tough. I experience a lack of empathy, understanding, and sympathy from others. I also feel an expectation that I should “just get on with it.” This can feel incredibly lonely. I have been in situations where friends have said, ‘You don’t look like you’re in pain, or even worse, they have told me to ‘stop mithering.’ Because of my experience, I rarely speak about the pain I am in. I feel that if I talk about my facial pain, others will dismiss me. So, I keep quiet. This too, can feel lonely.

One of the most difficult and hurtful consequences of having an invisible illness is the lack of understanding from others.[1]

Radical Self-Care

The hardest part of having an invisible illness is the lack of empathy we get from people in our day-to-day lives. The “just get on with it” mentality feels very unkind. We therefore need to have lots of self-compassion. Our disease may be invisible, but it is real. A part of our body is not functioning as it should. It is likely that our immune systems are fighting hard all of the time, making us tired.

In my case, infection and inflammation are the suspected causes of my facial pain, and doctors have found that my parotid gland isn’t working properly. One doctor told me that he thought a pervasive infection had damaged the lymphatic drainage system in my facial region. There is a reason that I feel unwell and weak, despite my disease not being visible to others. Other people may have an ill-functioning digestive system, kidney function, or inflamed joints. The list is endless. Whatever illness we have, some part of our body isn’t working as it should.

An Analogy

Think of football. A standard football has 32 panels: 20 hexagons and 12 pentagons. If something or someone damages one of those panels, it affects the ball’s performance. The football loses its spherical shape, which leads to an uneven bounce. The football isn’t as durable as it should be. A compromised panel can also lead to further damage, causing the ball to deflate or burst during life.

Humans aren’t dissimilar to footballs. If a part of our body does not function properly, we do not have as much bounce or speed as others who have fully functioning bodies. While others may not acknowledge this, it is imperative that we do. No matter how hard you kick a damaged ball, it still won’t bounce like it should. It’s damaged. The same is true with humans. If we push ourselves too hard, we will not go any faster. We will make ourselves more unwell in the process.

We therefore need to exercise radical self-care. It is challenging to not be able to keep up with everyone else. I find it really difficult. However, to prevent making ourselves more unwell, we have to acknowledge our limitations. This takes a large dose of self-compassion. We have to be kind to ourselves. I spoke about this in On Chronic Illness and Identity. Finding self-compassion is hard, but it is a vital part of our journey. Our bodies do not work as they should. We therefore, must not push our bodies too hard. We must exercise radical self-care.

Mental Health & Relationships

There is a direct link between physical pain and mental health. Anyone who endures endless days of physical pain will have bouts or long periods of low mood. It’s miserable being in pain all the time. This can be the hardest part, I find, of self-care. We need to be tender towards ourselves when we are struggling. Maintaining relationships with an invisible illness is also not easy. If friends knew our former selves as fun and energetic, then they may find it difficult to accept the change in our disposition. Sadly, this is where relationships can fracture. The friends who have stayed with me are those with whom I can communicate openly. They also have experienced illness themselves.

Intimate relationships (romantic/sexual) can also be problematic when we have an invisible illness. The same lack of patience and understanding that one finds in friendships can also exist within intimate relationships. I have not managed to hold down a romantic relationship since my facial pain began. All I can say on this subject is that if you have a lover or partner who is supportive, patient, and accepting of your invisible illness, then wrap them up in shiny paper and keep them safe in a treasure chest. Don’t let them go!

Medical Gaslighting

I have written two blog posts about the medical gaslighting that I have experienced from medical consultants. Clinicians have told me that what I am seeing or experiencing is a figment of my imagination. These experiences have been traumatic. I have chosen not to attend any more consultations. The gaslighting is too distressing. However, I want to touch on medical gaslighting within the framework of invisible illness.

As a patient who has an invisible illness, I am certain that this has contributed to the gaslighting that I have experienced. I am able to explain to doctors what my symptoms are. I am also able to communicate how my pain affects me. However, if I look fine, then I question whether this has contributed to the dismissive attitudes that I have come up against from doctors. I also question whether my invisible illness has contributed to my diagnostic delay. Medics feel no urgency to help me because ‘I look fine.’

Open and Honest Communication

I recently listened to a wonderful interview with Anneke Vliegen, the author of the memoir Recognise ME, on the podcast ‘Post-Exertional Mayonnaise.’ Anneke spent twenty years seeking the correct diagnosis for her condition. Medics misdiagnosed Anneke with myalgic encephalitis (ME). Doctors finally gave her the correct diagnosis of Ehlers-Danlos syndrome. Anneke speaks about the medical gaslighting that she experienced over the years. She also explains that once she received the correct diagnosis, clinicians were more respectful towards her.

Anneke highlights that patients with an invisible illness are more susceptible to experiencing medical gaslighting. This is even more likely if our condition is undiagnosed. Anneke says that as patients, we need to take some responsibility and try to be as open and honest with doctors about how our illness affects us. She acknowledges that this may involve making ourselves vulnerable to clinicians. If we can be open and honest with doctors about how our illness affects us, they may understand better. She rightly explains that doctors see us for twenty minutes, and they just don’t see what our lives are like. Anneke used a functioning scale, and she would tell doctors how many hours a day she was able to function for.

Reflection

I found this insight useful. However, I have found the clinical experience threatening. This has made it challenging to be open or vulnerable with consultants. As soon as I see the stern frown and closed look on a clinician’s face, I shut down and feel unable to speak. It’s difficult to be open and honest with people when there is no vessel open for authentic communication. Anneke’s theory is certainly something to aspire to. I do, however, think that both doctor and patient are responsible for open and honest dialogue. Not just the patient.

Stigmatisation

For those of us who have an invisible illness, especially with no diagnosis, we do come up against stigma within the medical community. In The Wilderness of Medically Invisible Disability, Catherine Hale from the Chronic Illness Inclusion Project talks about an article in The British Medical Journal that a GP and trainee psychiatrist called Lisa Steen wrote. Lisa Steen developed symptoms of a rare cancer that went undetected for a long time. Standard diagnostic tests could not explain her symptoms. Doctors diagnosed her symptoms as health anxiety. By the time they finally diagnosed her cancer, it was too late for them to treat it, and Lisa died shortly after writing her article, which she called Wilderness of the medically unexplained.

Lisa’s article is about patients who have physical symptoms that, like me, she was sure had an organic cause, but that health professionals doubted and dismissed. Lisa describes conversations with fellow doctors as feeling like “a goldfish with no voice.” She writes of watching doctors’ faces glaze over at her multitude of symptoms. I know that glazed look!

Catherine Hale speaks about Lisa Steen’s case. ‘Lisa acquired a stigma because medical professionals labelled her symptoms as medically unexplained,’ Catherine says. ‘The way that stigma works is that you believe that there’s something about your disease that makes you less credible as a person, and that makes you feel ashamed. There’s nothing shameful about us or our disease. Stigma is a form of oppression that unequal relationships impose on us. The inequality is about who has the authority to know things about our bodies. That authority admits no possibility of failure. So, when lab tests cannot detect our illness, a kind of flawed logic kicks in that says our disease doesn’t exist.’[2]

Reflection

Catherine’s words resonate with my experience over the last 11 years, consulting with clinicians. There is an inherent link between stigma and invisible illness. I have definitely faced stigma from doctors. Having an invisible illness definitely contributes to doctors not believing us about our symptoms. It also contributes to the delays that we experience in acquiring a correct diagnosis. For those of us who suffer with invisible illnesses, stigma is very real. I think that stigma has played a critical role in my negative experiences with medical professionals.

Conclusion

The challenges of living with an invisible illness are very real. The lack of support and empathy from others, coupled with the stigmatisation from doctors, makes it a lonely experience. Self-compassion and self-care are qualities that we must strive to foster. Our medical conditions are real, even though they may not be visible to others. Only we know how our conditions impact our lives, so kindness towards oneself is key to our survival and livelihood. Being kind to others, who suffer with an invisible illness is imperative too! Learning to be our own advocate is also essential. As difficult as this can be, these are our bodies. These are our lives, so we must keep speaking until we find the right doctor who can accompany us on our journey to better health.

Constantly feeling as though we need to prove that we have challenges can be frustrating and exhausting, especially when we’re running on empty. We frequently deal with a multitude of questions about our illness and this can be draining. These questions cause us to doubt ourselves. When others assume it’s all in your head, it can make you question your reality. [3]

Foot Notes

[1] Collins-Burke A, RN; The Challenges of Living with an Invisible Illness, April, 2021, Psychology Today.

[2] Hale C and Allam A; The Wilderness of Medically Invisible Disability, The Chronic Illness Inclusion Project, 24 May, 2022. This talk was part of the Disbelief and Disregard webinar at Liverpool University.

[3] This quotation is taken from the same source as footnote 1.

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