'I was in shock': Jacki on what she didn't expect when diagnosed with an autoimmune disease

When Jacki was diagnosed with her first autoimmune disease she said she had no idea what was to come. She tells Insight the lessons she’s learnt along the way.

Jacki pictured in the earlier days of her illnesses. Source: Supplied

In total I have five autoimmune diseases, all of which were diagnosed in adulthood. In my 20s, after my first diagnosis, I didn’t know that once you have one, it’s easy to get more. I was in for a shock and a steep learning journey.

I’ve since learnt that autoimmune disease happens when the body's natural defence system can't tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. There are more than 80 types of autoimmune diseases that affect numerous parts of the body.

I got my first diagnosis at 27; I passed out after 40 minutes in a sauna trying to get warm. I went to see a GP, who didn’t think about testing my thyroid function levels until my mother told him to check. My thyroid proved to be seriously underactive.

I now know that’s one of the difficulties with diagnosis – autoimmune symptoms are sometimes so general that they are often not looked for. In hindsight, various symptoms were building up inside me for years, but it took me a while to learn how to connect the dots and what questions to ask when seeking help.

Three months later, I got hives. I couldn’t sleep for such a long time because my skin would react when it touched anything. There is a connection with hives and thyroid levels but no one told me that then.

It took three GPs and many wrong diagnoses before I was sent to an allergist whose prescription made me constantly drowsy. And then I was told to just increase the dosage once I got used to the medication. Frustrated and annoyed, I knew this wasn’t a sustainable way to live. I began to look beyond Western medicine for answers. It was suggested to me that I should cut certain foods from my diet as they might be exacerbating my condition. I thought that was a better option to at least try rather than not being able to function properly.

Jacki, pictured here at a friend's wedding, said she often looked fine on the outside, but was in incredible pain on the inside. Source: Supplied

When your body attacks itself, you try to find answers and solutions. Each autoimmune I’ve had, I've relearned my system and found out what I react positively to, and subsequently my balance has moved towards a more holistic approach to healthcare. My autoimmune conditions have, at one time or another, affected my skin, hair, gut, thyroid, joints and muscles. While often I can see them flare simultaneously, each specialist has offered what they could but they tended to treat the symptoms within their own field of medicine and didn’t look further into the cause to see my issues holistically.

For many years, as I dealt with the trauma from all these life-changing conditions, I thought I was managing my stress, but it turns out I wasn’t and my stress was instead coming out as inflammation and flare ups. No longer conscious of being anxious, I would suddenly realise I couldn’t move my arm, or my scalp felt as though it was on fire.

It has taken me years to form better habits, inching towards a healthier life, being conscious of what I put into my stomach, and my body’s reaction. I wish I had realised when I was younger how important healthier practices and lifestyle choices like diet, yoga and meditation would be to my future self.

Jacki pictured here with her organic vegetable garden. Source: Supplied

I have learnt to challenge doctors and ask more questions; to get copies of all of my blood tests so I can see for myself what the numbers are. I’ve done many elimination diets over time (I’m not very good at them – they’re very hard!) to discover my main triggers and the best I’ve felt is when I’ve cut out certain inflammatory foods. Recently, in the strict part before reintroduction, I was completely pain-free and had renewed energy.

I’m still learning and reading and testing things out, but I’ve found I need to focus holistically to mend. Yoga and swimming for my body; knitting, meditation and other forms for relaxation to control my internal stress levels; and organic, clean healthy food to reduce inflammation. Amongst other tools, I have also established a more toxin-free household. It’s a constant journey and an ongoing learning process, but one I’m proud of.\

This is just one person's experience. SBS recommends consulting a GP before making any changes to your diet or medical routine.