Isolation of Invisible Illness
Dealing with any illness is demanding and impacts most, if not all, areas of a patient’s life. But living with an invisible illness adds another dimension again. It is a particularly excruciating, isolating experience.
When people who are important to us, or even society as a whole, don’t recognise what is going on with us, it can feel like our experience and, more importantly, our struggle is not validated or even taken seriously.
Importantly, it can feel like we are the only ones having this experience. When we don’t have that recognition, it can lead to feeling excluded and not belonging to the rest of society. It can even feel like we are not normal, whatever that then means.
Humans are tribal beings, like all mammals we are wired to live in groups. We would not survive childhood without a group to look after us. Having a sense of belonging to a group and feeling that our experience is shared by others is inherently important to us. And not only our wellbeing, but also to our sense of self.
You’re not alone
The number of GP visits is soaring and the complexity of illnesses increasing. The evidence is clear. More and more of us are experiencing symptoms of one type or another and our health needs are becoming more complex and indeed less visible.
Multi-systemic conditions like ME/CFS and Fibromyalgia are on the rise and long-term health conditions are recognised as one of the biggest challenges facing the NHS today.
Support groups are increasingly becoming action groups, campaigning for increased awareness, research and more effective treatment. Social media is a powerful tool for people who struggle to otherwise engage in activities and a great example of that is the #MillionsMissing campaign taking place this month.
Although focusing on ME/CFS, it is bringing attention to the importance of taking patients’ experiences seriously and take action. This message will benefit all who deal with illnesses that are less visible.
Invisible is still real, it’s just not visible to the untrained eye
The thing is that most illnesses are at least, to some extent, invisible. Inflammation, digestive problems, pain and fatigue aren’t visible like a broken leg or a rash. The experience of symptoms is inherently felt on the inside. The primary purpose of symptoms is to alert the person experiencing them to the fact that something is not okay and needs addressing.
Even when the symptoms escalate in severity, it is often not the symptom itself that’s visible, but behaviour that happens as a result of the symptom. Struggling to walk up stairs, for example, is a behaviour that shows that there is a symptom limiting that particular function. It could be a range of symptoms and it could be a short-term issue like a sprain or a longer-term issue like fatigue.
This applies to most symptoms, which then begs the question, what makes an illness visible?
Oftentimes, it is that we are more informed about certain symptoms than others. As a culture, we are better informed about illnesses like cancer and diabetes than we are about illnesses like Lyme’s or Fibromyalgia. This means that when someone tells us that they have e.g. diabetes, we know something about it and recognise it as a debilitating illness, even though we can’t necessarily see it. Unless a person with diabetes is in diabetic shock, it is unlikely to be visible to us. Yet, we don’t doubt it because we have an awareness that we have been taught.
Your voice matters
The clarion call this month of May, and particularly on May 12th, is to educate and share what you know and get curious about what you don’t know. This is the International Invisible Illnesses Awareness month.
If you are experiencing an invisible illness or someone dear to you is dealing with this demanding and frequently debilitating experience, your voice matters. It is important to share what you know to be true and help those who do not yet know to learn and become informed.
Cecile Richards, an American activist and campaigner, is attributed to have said:
“One of us can be dismissed; two of us can be ignored, but together we are a movement and we are unstoppable”.
This sentiment is the foundation principle of The Helpful Clinic and we will be making our voice heard at the Cambridgeshire Invisible Illness Support event at St. Mary’s church in Ely on Saturday morning, May 12th.