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Seren Kiremitcioglu • 25 May 2020 • 8 minutes

What is the impact of chronic illness on an individual? [Interview] #VasculitisAwarenessMonth

You may have heard about chronic illness. But how much do we really know about it?

UK Definition of Chronic Illness

According to the NHS Data Dictionary, the definition of chronic illness (otherwise known as a ‘long term health condition’, ‘chronic disease’, or ‘chronic condition’) is as follows:

“A health problem that requires ongoing management over a period of years or decades. A Long Term Physical Health Condition is one that cannot currently be cured but can be controlled with the use of medication and/or other therapies.”

Close up photo of a doctor holding a phone

What is considered a chronic illness?

Anything that is long-term and incurable (but treatable with medicine and/or other therapies) counts as a chronic illness. Common examples include:

  • Asthma
  • Diabetes
  • Arthritis
  • Multiple Sclerosis
  • Chronic Fatigue Syndrome
  • Ulcerative Colitis
  • Crohn’s Disease
  • IBS

I live with a chronic illness called Vasculitis, which is an umbrella term that covers a variety of vasculitis diseases. My specific illness is called Eosinophilic Granulomatosis with Polyangiitis, otherwise known as EGPA. This particular disease affects 1 in 100,000 people in Europe, so you have to be pretty lucky to get it!

What is vasculitis?

To quote the experts at Vasculitis UK, “Vasculitis is a rare inflammatory disease which affects about 2-3000 new people each year in the UK. Vasculitis means inflammation of the blood vessels. Any vessels in any part of the body can be affected.” 

A diagram of a normal artery compared to an artery with inflammation
Image Credit: https://aoccb.com/

The cause isn’t yet known, and realistically, I don’t think I’ll ever know. But I’m okay with that. “Primary Systemic Vasculitis is an auto-immune disease with no known cause, although genetic makeup may make some people more susceptible.”

When it comes to vasculitis, every person is unique – no two people will experience the exact same symptoms in the exact same order. My disease began with pulmonary nodules, which in plain English translates to small growths in the lung.

An illustration of different kinds of lung nodule
Image Credit: Jessica Olah, Verywell

A whole range of symptoms followed, some of which took me to hospital more than once: chest pain, joint pain, breathing problems, weakness, chronic fatigue, bleeding, vomiting, headaches, bowel disruption, rashes, incontinence, asthma, and whole-body pain.

4 years on, my main pain points on are chest pains, breathing troubles, chronic pain, joint and muscle pain, chronic fatigue, bowel problems, temperature regulation, and chronic headaches.

Is it curable, or is it forever?

Chronic illness, by its very definition, is not yet curable. However, it can be treatable with medications and/or therapies.

A photo of tablets lined up on a table next to a plastic tablet organiser

My vasculitis was primarily treated with a high dose of steroids, followed by a drug called methotrexate. I currently take a large array of medications, which all but makes me rattle every time I walk!

In terms of mental health care, I was unable to access help for a long time – years, I’m talking. However, since moving to Portsmouth I have been lucky enough to access a CBT course all about learning to live with a long-term condition. This helped me massively; not only did I finally feel acknowledge and seen, but I developed a ‘toolkit’ which helps me in the day to day management of my symptoms.

How does chronic illness affect a person’s mental health?

Any long-term health condition can have a significant impact on a person’s mental health, but like anything, it really does differ from person to person. If you want to read about different experiences, I wrote a blog which compiled statements by those with vasculitis on their experience with mental health care.

In terms of my own experience, I lived with depression and anxiety before my vasculitis diagnosis. However, my life completely changed the day I became ill.

A photo of me asleep in a hospital bed, holding my boyfriend's hand

All the things I loved doing, I couldn’t do anymore. I had no idea what my body was doing, or why it was doing it. I endured a complete identity crisis, unsure of whether I’d be able to do the things I loved when I got better, if I ever did get better.

At my lowest points, I became suicidal; it felt like my body wanted to hurt me 24/7, that it had turned against me. I no longer had the attitude of immortality that young people had, and no longer felt capable of achieving anything I wanted. Instead, I was defined by what I couldn’t do, and I knew that life would never return to normal.

It took years to accept that life would always be different from here on out, but with counselling, time, and hard work, I’m now in a much better place.

A photo of me in hospital. I have just come out of surgery and there are numerous wires

What’s it like living with an invisible illness?

I asked other people about their experiences with chronic illness. Here I’ll include the interviews of people with vasculitis, but make sure you look out for my next blog which will explore the experiences of those with different invisible and chronic illnesses.

What’s it like living with an invisible illness?

Zoi: It is a rollercoaster of a life. You cannot plan ahead and even if you don’t really want your illness to be the centre of your life, sometimes you just can’t avoid it. You have to adjust and adapt to a life you didn’t choose. It is a constant challenge.

Anonymous: Living with an invisible illness is a real game changer in life. You need to find your new normal and adapt to it. You also need to come to term with your limits, which is not easy to do at times.

What do you wish you could tell people who knew nothing about Vasculitis / Invisible Illness?

Zoi: Vasculitis is rare, but very real. It has affected my physical, emotional and mental health. It is chronic, it will never really go away. It happened to me, it can happen to you or to one of your loved ones. Vasculitis can be a very serious chronic illness; it can be fatal if not diagnosed early and treated correctly.

Anonymous: I wish I could tell them how frustrated and puzzled I felt when I was transferred to a different hospital since the doctors I saw initially did not know what was wrong, and why my kidneys are running only 15%.

I wish I could tell me that it took various bloods and a kidney biopsy to get a diagnosis, that it took months to get my head around what my illness is, to understand it.

I wish could tell them how scary it was when I could not remember three days I spent in ICU. I wish I could tell them I cannot forget the face of the nurse that was with me during my first plasma transfer, or the face of the doctor that took my hand when I woke up in ICU.

I wish I could tell them that I could not have gone through this without my husband in my corner, to support me and advocate in my behalf. I wish I could tell them that now due to my health limitations, I cannot work full time or apply for the job I would love doing.

What’s the most annoying thing people do in terms of your illness?

Zoi: The “friends” making lovely comments like: I didn’t invite you because I was sure you wouldn’t be able to come – please, let me take that decision. The annual flu jab fight: people without knowledge of my illness and treatment deciding that I am not eligible.

The list can be endless, believe me.

Anonymous: What I find annoying is that people tend to forget I cannot do certain things – from the friend who does not understand why I cannot visit two days in row to the co-worker who does not understand why I cannot do certain work tasks.

What comforts you when you struggle with an invisible illness?

Zoi: The Vasculitis UK charity and especially the online support group have been with me through whole my journey. Not only did they give me support, but also gave me a new purpose. My virtual vasculitis family is the best!

I have been lucky to have a very good medical team taking care of me. My GP surgery (St Levan surgery in Plymouth) are there for all my struggles: physical, emotional, mental. My rheumatology team have been great (Dr King and his team Derriford hospital Plymouth).

Anonymous: It is said that in difficult times you find out who you can rely on and for me this was revealed last year when I was diagnosed. This illness brought me some terrible experiences but also brought lots of love.  I felt supported by my dear old high school friends who flew to London to visit me and give me a haircut at home when I got out of the hospital! And every day I felt loved, supported and understood by my husband who is always by my side.

You can follow Zoi Anastasa on Twitter, at @ZoiAn2.

If you want to learn more about the impact of chronic illness on an individual, sign up to my newsletter! You’ll receive email updates on when I next post a blog. You can also support the Vasculitis UK charity, here.

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