Seren Kiremitcioglu • 16 September 2018 • 4 minutes

Facts about Invisible Me

1. I have had an invisible illness since the age of 9.

2. I developed a rare autoimmune disorder called vasculitis at the age of 19.

3. My autoimmune disease developed as I stepped off an airplane from Palma de Mallorca.

A photo of me in the Blue Lagoon in Iceland

4. I can’t count how many times I have been in hospital.

5. I take codeine to manage chronic pain. A drug that can be pretty intense for healthy people feels like paracetamol to me!

A photo of a balcony, with a table and a chair. There is a can of beer, a bowl of cereal, a glass of juice and a laptop.

6. My disease started with stabbing pains in my lung. After a CT scan, it was discovered that I had pulmonary (lung) nodules.

7. It took a year for me to be diagnosed. This was horrible, but apparently it can take up to 4 years on average to be diagnosed with an autoimmune disease. (Source: UVA Health)

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 vasculitis a while before my main symptoms arrived 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. EGPA only affects 1 in 70,000 – 1 in 100,000 people in Europe.

11. My particular experience of vasculitis affects the following:

  • Lungs
  • Bowels
  • Joints
  • Muscles
  • Mental health
  • Nose
  • Energy levels

12. I take an injectable medicine called Methotrexate once a week, along with various daily tablets, 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 with a blood supply can be affected by these attacks.

15. The first medicine I was put on to treat vasculitis was a steroid called Prednisolone. It made me gain a lot of weight, particularly around my face, shoulders, and tummy.

16. I no longer drink alcohol, as it makes me feel terrible. When I say terrible, I mean my organs feel like they’re shutting down one by one for weeks!

17. I live with chronic fatigue and chronic pain. It’s rare you’ll see me up past midnight!

18. Vasculitis and its diagnosis triggered a breakdown of my mental health.

19. My health is a balancing act between vasculitis and mental health. If I’m stressed, this can trigger a vasculitis flare, which can trigger my depression and anxiety, which in turn can trigger a deeper vasculitis flare.

20. I have been discriminated against more than once due to my illness.

21. Exercise tends to hurt my lungs, joints and muscles. But I work around it with walking, cycling, sea-swimming, and yoga.

A photo of me with a sailing jacket on, smiling

22. Having an autoimmune disease was a huge knock to my self-esteem. I went from feeling the limitless joy of youth to feeling geriatric. It’s taken me years to adjust to my new limits and capabilities, but I’ve been working on rebuilding my self-confidence. I’m much happier now!

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. I can often feel like a burden to others.

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.

A photo of me (right) and my friend Laura (left)

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. You can find out more, here: https://en.wikipedia.org/wiki/Spoon_theory

28. I will never return to the person I was before, but that’s okay. I’m stronger and more resilient now!

29. I speak about my invisible illness because I want society to know that people with invisible illnesses deserve to be treated fairly and valued.

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

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