5 things I have learned by living with an autoimmune disease

I am quite a pragmatic person (and sometimes, a dreamer). I do not consider myself to be overly optimistic. I always try, however, to reflect what I learn from each situation, with the objective of making the most out of every experience.

I performed this same exercise since I was diagnosed with an autoimmune condition. After I was diagnosed, for a brief period, I felt like I was on a rollercoaster ride – from the initial shock of the diagnosis to a frenetic research period, followed by a lot of confusion, and hopeless. However, I did manage to find my way. With time, I built a kind of a toolkit to help me to navigate through this complex condition. I pick and choose each “tool” based on my needs.

During this process, I started identifying key pillars that helped me in managing my condition. These pillars continue to help me every day:

Listen to my body

Previously, I was very bad at listening to my body cues. I simply followed what my mind was telling me. There were so many signs indicating that I was unwell, which I somehow overlooked, before getting seriously ill. I was always so busy and I needed to carry on. I never considered stopping and taking a break as options. As a result, issues within my body accumulated over time, until one day, it ‘exploded’. It’s hard to admit, but it took me some time to realise that I was disconnected to my own body. I think many of us let go of this natural gift. I am still not perfect, but I now more aware and can identify my needs, energy levels, body cues (like my breathing rhythm), etc. Moreover, this ability to scan my body is now automated. It’s a natural behaviour, where I explore how I feel throughout the day, almost subconsciously. To me, it resembles an innocent child’s behaviour, the way they express their feeling without thinking twice. The reasons behind for such reactions are often more complex. However, merely being aware without any judgement helps me to better connect with my body.

Identify my triggers

This is a consistent effort and I would not be able to achieve it without being mindful about my thoughts, feelings, body sensations, and the world around me. Although triggers may not essentially remain consistent, I am aware of the significant factors that can adversely affect me. Although I may not be able to avoid them all the time, I am now equipped to mitigate their impact. For example, stress is a major trigger. I cannot remain in a highly stressful state for a long period or I will suffer the consequences. Hence, I began by making choices to avoid reaching high stress levels every day. I also began to explore tools that can help me in managing my stress levels, such as breathing, mindfulness, grounding, etc. Unfortunately, this is not a one glove fits all tactic. I realise that each person needs to identify their own triggers and explore the best way to address them. Eventually, I will also share some of my favourite practices.

I don’t label myself

Looking back, I am happy that I changed my life for the better due to my disease. However, I don’t let my disease define me. I recognise and accept that I have an autoimmune condition but I don’t think of myself as ‘Elisa a lupus sufferer or Elisa a Hashimoto’s warrior’. Defining myself by my condition places a weight on my shoulders. When you know that you have a chronic condition, it can cause emotional distress which can contribute negatively to the disease process, which is an endless loop. Don’t get me wrong, I am not living in denial or trying to be overly positive. I acknowledge the thoughts, fears, and symptoms without allowing them to become my identity. 

Build my support network

The act of sharing and building relations helped me through this process. My husband is my rock and my biggest supporter. I call him Dr Tricon because I feel better just by seeing him. With time, I opened up and started building what I could call a wider support network, where I encountered doctors I wanted to work with (and doctors I definitely do not want to work with), complementary practitioners, online support groups, etc. I realised that I could not approach this disease from only one angle and that I was not alone or unique. I now understand that someone somewhere is probably experiencing or has experienced the same at some point and there’s some comfort learning from their experiences and supporting each other in a positive way.

Do not copy and paste

I accepted the fact that this is a complex disease, with multiple contributing factors and that each case is unique. I came across many protocols and diets and I promptly adopted them in despair to get better. But there’s so much noise and strong opinions related to these conditions, making this a complex field to navigate. Eventually, I realised that this approach is ineffective. Many opinions and protocols listed online may be based on best practices. However, they might not be the best approach for everyone. I needed to dig further into my root cause, explore my triggers and identify ways to manage my condition, following a personalised approach to health. This is not a one-off effort; it’s a daily focus.

Living with an autoimmune condition is not a linear experience with an incremental recovery path but one thing that is on my power is to select the ‘lens’ I chose to see each day. And looking back since my diagnosis, I am pleased to see how much I learned. It was actually difficult for me to filter the top 5 learnings to share with you.