• Expert By Experience

How Chronic Illness Impacts Mental Health

(Illustration by Ananya Rao-Middleton)

There are multiple stages a person goes through while living with a chronic illness. Whether this is from a diagnosis later in life or one you have lived your whole life with. We go through most of the same motions; however, the mental impact goes unnoticed. Although chronic illness impacts the body physically, there are many parts that affect us mentally.


Many go through symptoms for long periods without any answers. Constantly gaslit by health professionals to believe our symptoms are not severe. That alone is traumatising enough, something we also internalise. But, when the symptoms worsen with time, it can feel incredibly isolating. You don't know which way to turn for help and attempt to control an uncontrollable situation without specialist intervention and treatment. Yet, that day when you finally get a diagnosis is the happiest. The day the weight is lifted off you as your health professional listens, believes and confirms your symptoms. This happiness is often misunderstood by others as they think we want to be disabled/ill, but this is just not true. If we had control over the situation, we would never wish this on ourselves or others. The truth is, we don't have control over it until we get support from our health professionals. That is what lifts our mood, the autonomy of new treatments and interventions.


As time passes after a diagnosis of chronic illness, you begin to overthink every action leading up to diagnosis. The mystery of "how did this happen" can roll around in our heads constantly. This often leads to you thinking about the person you were before symptoms started or the person you could have been without the diagnosis—the carefree one. People often forget how hard it is to stand back up after your whole world has been turned upside down because from the outside, it looks so easy. But it isn't easy. For me, my diagnosis was the start of grieving the previous me. I went through all 5 stages; denial, anger, bargaining, depression and acceptance. After two years of living with this diagnosis, I thought after 'acceptance', I would be okay again. But sometimes, in a flare-up of symptoms or an anniversary of the diagnosis, I go backwards or even go through them all again. It can be exhausting going through intense emotions time and time again; however, I always try to keep in mind if I did it once, I can do it again.


Once emotions around the diagnosis/symptoms are regulated, you begin to learn how to look after yourself again. Having a condition that affected my mobility meant I had to learn how to walk up and down stairs without injuring myself or knowing when to provide heat on my joints to help soothe them. Something that is constantly misunderstood by others is our emotions control our physical health and vice versa. It can become a vicious cycle, especially if you live with conditions such as depression or anxiety alongside your chronic illness. This requires learning how to manage your emotions to avoid a flare-up of symptoms. We need to able to recognise and control stress, anger and fear, and many other emotions. If you're anything like me, it can be hard to recognise certain emotions, which can mean ignoring symptoms until you literally can't function anymore. This is extremely harmful and the part of my journey that I am working on to improve. Other days, it is just unavoidable and know that you must take extra care with your body to recover quicker. This is an adaptation not recognised by others as a form of self-care. However, this is a crucial part of being able to look after ourselves physically and mentally.


All the previous things mentioned are pretty much universal for anyone living with a chronic illness. But when you bring in culture and ethnicity, it can get trickier than imagined. Many chronic illnesses are invisible, including my own. This is why others from a South Asian background believe those with chronic illnesses do not struggle. They have a “see it to believe it” mentality. This results in many judgements of South Asians imagining that we do not require western medications or mobility aids. South Asians with chronic illness avoiding using these requirements in front of others due to these stigmas. Eventually, this leaves someone feeling like they must "overcome" their illness. An ableist narrative that becomes detrimental to their mental health.

There is also a worry around what others will think of them, also known as "Log kya kahenge". A mentality that causes South Asians living with chronic illnesses to internalise shame from their illness. I have also done this. I believed previously that I should not bother others with my struggles, that I should not take medications in front of others and avoid using my crutches. I was made to hate who I was and strive to be the person I was before. But that was just not possible. During this time in my life, I sought out help from a therapist. I learnt, after seeing a therapist, that I need to accept help and when it isn't offered, then find it elsewhere. Giving up was not an option, my health was on the line.

Previously, when dealing with acute illness in a South Asian household, I was often left with various herbal remedies to fight off symptoms. Everyone around me became an honorary medical professional that believed they knew better than the person before them. When I was diagnosed with a chronic illness, they practised the exact same behaviours. During my "denial" phase of grief, I believed this would fix the problem, and I would be okay again in a matter of weeks. In the back of my head, I knew this wasn't true. But I continued to take the remedies given to me. I now know how harmful this was for me; avoiding western medications to take a 'traditional' approach only worsened my condition. I didn't need quick fixes or cures, just the knowledge that the ones around me were there for me. However, the more I became frustrated that herbal remedies didn't work, the more my family disappeared. The truth is most South Asians cannot look after someone from an emotional level. This meant my support was limited.

If you've read this far, you probably think that life with a chronic illness is all doom and gloom, so how can we ever improve mental health? However, if you read between the lines, I outlined many ways not to respond, act or support someone living with a chronic illness. The most significant way you can help someone is by recognising your own behaviours with them, knowing what you should change and then doing it. Therefore, if you read through this and identified your own behaviours, maybe you need to be doing something to change it.