Anyone you know could have a chronic illness.
It took sixteen years for Julia Knight to get diagnosed with Lyme disease. She lost her marriage and her ability to work during that time. Going through several misdiagnoses made her feel like she wasn’t heard.
Feeling unheard is one of the staples of an invisible chronic illness.
Dr Nicole Pernod, a clinical psychologist who focuses on trauma, knows this from first and second-hand experience.
“I knew there was something wrong, but a lot of neurologists didn't believe me… I got pregnant and the hormones from the pregnancy made the pain absolutely skyrocket… It was horrible, and it affected my relationships. I was isolated. I feel traumatized from the pain, just not knowing, feeling under siege, like something took me hostage. I didn't know what was going on,” said Pernod.
She thinks it is normal and expected for people to develop anxiety or depression, going through life with a chronic condition. “Just going through this causes mental health problems. How could it not? It’s grief. It's trauma.”
One becomes traumatized when one loses control over their body. The body is trying to cope with it and becomes hyper-vigilant, but is also dealing with a lack of capacity. Several people with chronic conditions have lost the ability to do things they could before: like walking, paying attention or even working.
The discussion of mental health and chronic illnesses started about a decade ago, but it has always been about how mental health illness can trigger a physiological disease. There hasn’t been much research on how a chronic physiological illness can trigger a mental health illness. The last major research study on the subject was conducted in 2013. It was deduced that participants were 45 per cent more likely to develop a mental health disorder if they had an autoimmune disorder.​
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Quality of life for those with mental and physical problems is considerably worse compared with the quality of life for people with two or more physical health problems. Any score beneath 50 is considered poor, and any score between 50 and 79 is considered moderate.
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Apart from that report, the Cleveland Clinic has kept track of how likely it is for people to develop depression if they have a chronic illness. According to them, one-third of people with a chronic illness will experience symptoms of depression, and 40 per cent of people with Parkinson’s disease or Multiple sclerosis will be diagnosed with depression.
Fortunately, the correlation between chronic illnesses and mental health is gaining notoriety. The University of Cambridge is currently conducting a research study called INSPIRE, focusing on Rheumatology patients’ experiences of support, medical care, and the effects of their diseases on physical and mental health.
Melanie Sloan, the principal investigator of the INSPIRE study, has conducted several studies about how the mental health of patients with an autoimmune disorder has been affected by the treatment provided by their doctors. Her goal is to quantify how much of an effect medical treatment quality has on a patient’s mental health.
“We looked at the [patients] who had the longest diagnostic journeys. So 10 years plus, and the ones who had the shortest, one year or less and compared their mental health many years later, and their healthcare behaviours and their perception of care… The biggest reductions were the ones who'd had the psychosomatic or functional misdiagnosis. They'd had much lower mental health in many years later, satisfaction with life was lower, satisfaction with care. Yeah, hugely, I'd say the health service itself is often usually responsible for damaging the mental health of these patients," said Melanie.
Melanie Sloan
Source: University of Cambridge
She has encountered doctors who have changed their behaviour and practices for the better after reading patients' perspectives. Melanie also believes the pandemic will bring about more positive changes.
“There's definitely more awareness. And now we've got long COVID as well, there are so many similarities with the fatigue, with pain, with the neurological symptoms. Hopefully, there'll be more getting to grips with what actually is causing it so that we can treat it more effectively. And the patients won't have the years of [being] told it's in their head or psychosomatic. It is very, very demoralizing, and then stops them reporting symptoms in the future, so they get worse care.”
-Melanie Sloan
Although this study focuses on autoimmune disorders, it will likely bring a greater focus on chronic illnesses, especially invisible chronic illnesses, prompting more research.
Any chronic illness affects one’s daily life, but invisible chronic conditions have an extra layer of feeling like your condition is invalid.
“[People with invisible chronic illnesses] become very anxious and depressed because they're not being heard… It's the people who have been misheard who just can't get to the bottom of their illness, like me. And then they become the same as me, sort of give up. Nobody's listening.”
-Julia Knight
A lot of times people develop a mental health disorder because of a misdiagnosis and lack of support.
Julia wasn’t depressed. She was fed up. “I was so distraught by nobody listening to me that I took an overdose… the doctors have given me an absolute armoury of drugs [to treat my symptoms] So, you know, if people get desperate, and they're all in the cupboard, that's what happens.”
Julia Knight
Source: Lyme Disease UK
She is not the only one who has gone through this process. Margaret Bennet had tonsillitis, chest infections, throat infections, sinus infections, and conjunctivitis several times, for 30 years before she was diagnosed. She was fifty-one with Common Variable Immune Deficiency (CVID).
“At the beginning, you're very confused about what it means. And your GP knows nothing about it because they've probably never come across anyone with [CVID]… a lot of these rare diseases do get overlooked,” said Margaret.
It is not just in the health sector where people with invisible illnesses feel misunderstood and unheard. It is also among the public. For most people, seeing is believing and when people can’t see a person’s illness, they may not believe it is real or valid enough.
“When you have a diagnosis, and people can see it, they're more compassionate. I think they're more understanding of it. But if you have an invisible illness, then somehow people just can't understand what they don't see. So, they're less likely to understand why that person would be depressed or anxious because it doesn't look like you're sick.”
- Dr Nicole Pernod
Another aspect of an invisible illness’s validity is accepting one’s self condition and its validity. It is hard to come to terms with the fact that one has a chronic condition, especially one that is not visible to the naked eye.
Within the past year, Emma Roy’s several autoimmune disorders, including Hypothyroidism, Irritable Bowel Disorder and Arthritis have worsened.
Emma Roy
“I've had to learn how to grieve what I'm going through and understand that I'm never going to be a fully able-bodied person… Can I associate with being disabled? Can I not associate with being disabled? And so that's a whole mental health challenge,” said Emma.
She also acknowledged there is a lot of shame and guilt surrounding this experience. “You feel guilty for not being able to do the things you could and show up in the way you put before. That definitely gets to someone's mental health, and then there are certain things like I can never do again.”
The Global Autoimmune Institute said that many patients agree that mental health is not spoken about enough when discussing the effects of a chronic illness.
In a recent article, the Global Autoimmune Institute said some elements of chronic illnesses that can affect mental health are: “Unrelenting fear and worry about disease fluctuations, flare-ups, or declining health… Feeling worn down by doctor appointments that feel unproductive. When you have an invisible illness and your tests come back normal, it can be distressing because you might feel like you have to work harder to “prove” your symptoms to your doctor.”
Becca Bracialle has had to deal with this. She constantly needs to suppress her Tourette’s when she is in public. One of the ways her mental health has deteriorated is due to this hypervigilance to not say the wrong thing.
“You don't know how people are going to react to it, and you don't know if you can really offend someone, especially if it becomes racial or anything like that. Or if I see someone that's fat, I might say that. And it's quite scary because I'm like, oh, no, I'm going to upset someone. And it kind of puts me in danger as well, if that makes sense.”
This makes her look back to when she had more independence and was able to do all the things she wanted to, instead of doing the things her condition allows her to do.
Becca Bracialle
For Félix Muñoz, who has a secondary amino deficiency because of a metabolic disorder, what affected their mental health was the lack of understanding from people regarding their autoimmune disorders and mental health.
“I just thought that there wasn't any real support. There wasn't any real understanding…it didn't feel like I could truly like talk about what was going on… I felt like I was being very dramatic and, making it up. I felt like it was too much for people. You know, like, I was taking up too much space, and there wasn't any room for these discussions.”
- Félix Muñoz
The lack of good treatment from the health sector is what has affected Paul Ryan’s mental health the most. He believes a part of his mental health deterioration can be attributed to feeling unheard by his doctors, and some can be attributed to his scleroderma.
“I can sense that my mental health has suffered because of the illness itself… Whereas I think there might be very subtle physical effects in the brain, which are perhaps affecting mental health and then just the stress of the disease itself, and then also the stress of trying to get reasonable medical attention,” said Paul.
Rachel Greenley
In her time as a nurse, Rachel Greenley has seen several patients who have developed a mental health disorder after getting diagnosed with a chronic illness. She attributes most of the struggles they have to a lack of control.
“How do I lead a normal life and what does that mean for my future... feeling that lack of control can cause a lot of distress, a lot of difficulties. And through that, I mean, sustained kind of pain can lead to depression, sustain uncertainty around medical examinations and procedures and having difficult interaction with healthcare systems can lead to a lot of anxiety into the future,” said Rachel.
Despite all this, there are some positives regarding the world of invisible chronic illnesses. For starters, it shows anyone with a chronic condition just how strong they are and how much they can physically and emotionally handle.
“If you have something happen to you, which completely ruins your life, whether that be illness or something else. It completely changes your outlook on life and what's important and what is not… I know what it's like to lose everything and come back. So people must realize that you can rebuild your life, whatever's happened to you.”
- Julia Knight
For Margaret, getting diagnosed meant getting the treatment she needed for her CVID and having a better quality of life.
“The positive side of diagnosis from a mental health point of view is knowing that things are going to get better. I think it also helps to know what's wrong because I always felt… I was letting people down.”
Margaret Bennett
Source: BBC
Living with a chronic illness also shows you who will be there for you to support you and try to understand your condition.
It also opens the door to a new community of like-minded and abled people who know what it is like to have your life hindered by something invisible.
That is what has helped Dr Pernod throughout her life. Especially when her neurological chronic illnesses worsen and cause more fatigue.
“ Connecting on social media to more of the chronic illness community has been a real lifesaver for me, because… everyone thinks that can't happen to them, and then it does. And you just meet other people. And there's this solidarity, that you're kind of soldiers together,” said Dr Pernod.
Paul Ryan
Paul has also found comfort in the chronic illness community. He started going to a Scleroderma support group in South London a year and a half ago. The group helped him normalize his condition and familiarized him with the surrounding vocabulary. It also made it easier for him to explain his Scleroderma to people in his life who didn’t know how to support him.
Emma already had her community. She has several close friends who, like her, have a chronic illness. “I'm lucky enough that I have friends that go through the same things or similar things, or at least are understanding enough.”
She believes now that more people are aware of all these invisible conditions, they can get more easily diagnosed and normalize these experiences, starting the conversation of invisible chronic illnesses.
“Globally, approximately one in three of all adults suffer from multiple chronic conditions (MCCs),” said the National Center for Biotechnology Information.
In a 2012 report, the Department of Health and Social Care said that in England about 15 million people have a long-term condition. The percentage of people with a chronic illness raises exponentially once they are older than 40 years old.
“People with long-term conditions now account for about 50 per cent of all GP appointments, 64 per cent of all outpatient appointments and over 70 per cent of all inpatient bed days.”
- Department of Health and Social Care 2012 report
Academia’s awareness of invisible chronic conditions has progressed, but not as much as the people suffering from it wish it would have.
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“When I was an undergrad… I was trying to get my accommodations. They said, well, do you have learning disabilities? They're like, yeah, you have learning disabilities, but your IQ is higher than what most people with learning disabilities would have, which would put you at an unfair advantage. And they didn't give me the special circumstances,” said Emma.
However, she does believe socially, there have been great strides in educating people about invisible chronic illnesses. She attributes this to social media.
Rachel, who was a nurse for ten years, thinks there is one important detail the health sector and academia haven’t caught up to yet. Mental health and physiological health should not be treated as separate things.
“I think that mental health is considered mental health and that neurological disorders are still kind of packaged in their kind of branch… there's a lack of mental health literacy or health literacy that would even assume that people would understand that the two could be combined,” said Rachel.
Thankfully, several campaigns have changed the way people approach mental health. It is now normalized and treated as valid.
“I do think there is a shift towards understanding that mental health is in every aspect of health. And that probably in a more practical sense of our healthcare providers asking about mental health when they're considering diagnosis,” said Rachel.
Dr Pernod believes invisible chronic illnesses will be further studied now that the pandemic has taught the world that an illness doesn’t have to be visible to affect someone’s way of life. Especially now that several people who had COVID-19 have chronic symptoms they can’t get rid of now.
“I think COVID is going to make more people research this now. Because now you have people that are dealing with long COVID symptoms… So, my hope is that because there's just this huge amount of people that are now having these symptoms that everyone's becoming conscious of, that that will inform more research for things that have been long-standing,” said Dr Pernod.
Dr Nicole Pernod
The hope is that by raising awareness of an invisible chronic condition like long-term COVID-19, more research like the one Melanie has been conducting will be done and change the way academia and the health sector treat invisible chronic illnesses.
The more people with invisible chronic illnesses are willing to share their stories, the more these conditions are normalized and understood among society.