• Seren Kiremitcioglu

Facts about Invisible Me

Updated: Jul 31, 2019

1. I have been ill since the age of 9.

2. I have been really ill since the age of 19.

3. My autoimmune disease struck me as I stepped off an airplane from Iceland.

4. However, I really suspect my autoimmune disease started when I stepped off an airplane from Palma de Mallorca, two weeks before I returned from Iceland.

5. (Yes, 2017 was filled with many great adventures.)

6. My disease started with stabbing pains in my lung – pains so bad I couldn’t breathe and needed morphine. STAT!

7. It took a year for me to be diagnosed. Boo.

8. I was deemed ‘un-diagnosable’ until I had a lung biopsy in November 2017. It hurt.

9. It’s been suspected that I had this disease a while before my main symptoms struck in November 2016. But no one can confirm this.

10. My disease is called ANCA Negative Eosinophilic Granulomatosis with Polyangiitis (EGPA) – otherwise known as Churg Strauss Vasculitis, otherwise known as vasculitis. EGPA only affects 1 in 70,000 - 1 in 100,000 people in Europe.

11. My vasculitis affects the following:

  • Lungs

  • Bowels

  • Joints

  • Muscles

  • Mind

  • Nose

  • Energy levels

  • (Wait, isn’t that, essentially like, everything?)

12. This means that I take a ‘pretty toxic’ injectable pen once a week, various tablets daily, plus an inhaler and a nasal spray.

13. Having an autoimmune disease means that my immune system attacks itself.

14. Having a vascular autoimmune disease means that anywhere that has a blood supply can be affected by these attacks. Oh wait – that’s everywhere!

15. I was initially put on steroids to ‘calm my immune system down’. This made me gain a lot of weight. When the doctor weened me off them, the pain was agonizing. Fun!

16. Drinking alcohol makes me feel terrible; when I say terrible, I mean my organs feel like they’re shutting down one by one for weeks. This applies to any quantity of alcohol, so I don’t drink any. Double boo.

17. I don’t smoke either, for obvious reasons.

18. My Vasculitis and its diagnosis triggered a breakdown of my mental health, which I continuously work on improving. It’s a work in progress.

19. My health is a balancing act between vasculitis and mental illness. If I’m stressed, this triggers a vasculitis flare, which triggers my depression and anxiety, which in turn triggers my vasculitis to get worse. It’s a vicious cycle.

20. I am constantly learning to adjust to my broken body – it will be a lifelong process.

21. I get tired very quickly, and exercise hurts my lungs, my joints and my muscles. But I'm trying to get back into it.

22. Having an autoimmune disease can be a huge knock to your self-esteem. I feel geriatric, which is irritating when I should be a wild 21-year-old partying and being reckless. I used to be super proactive, always traveling and sailing and doing things. Now I’m trapped in a body which doesn’t like doing anything, so I’m lucky if I can even muster the strength to cook dinner.

23. Having an autoimmune disease diagnosis isn’t being handed a neat list of things that could go wrong. It’s the knowledge that basically anything could go wrong and you have to be prepared to take the correct steps to ensure that they don't go too wrong.

24. A&E is my friend, which isn’t fun when you hate bothering people and dislike making fuss.

25. I have the best friends in the world, who will hang out with me during my A&E visits for hours on end. Shoutout to Emma and Laura.

26. I have the best boyfriend in the world, who supports me endlessly and helps me with everything I can’t do.

27. I find that the Spoon theory is incredibly accurate and everyone should signpost to it when they are in the company of people with invisible illnesses. It basically shows people that we only have a set amount of energy each day, and certain tasks use a certain amount of spoons. Find out more, here: https://en.wikipedia.org/wiki/Spoon_theory

28. I will never return to the person I was before. I will always be ill. And I'm slowly learning that this will have to be okay and this does not define me.

29. I really want people to understand that invisible illnesses are real. Adjustments need to be made and different people with different illnesses will have different abilities. I'm hoping to achieve that with future blogs... watch this space!

30. I am so lucky to have the support I do, and the access to free healthcare. Without it, I wouldn’t be here. So, thank you, NHS!

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