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Seren Kiremitcioglu • 27 May 2020 • 11 minutes

What’s it like living with an invisible illness? #VasculitisAwarenessMonth

We’ve all seen examples of conditions and illnesses that are visible. For instance, we’ve probably all seen someone with a broken leg.

But did you know that there are a lot of conditions which can be classified as invisible illnesses?

The question is, what are they, and what’s it like living with one?

A photo of a disabled parking space
Credit: AbsolutVision – Unsplash

What is classed as a hidden disability?

The Invisible Disabilities Association defines invisible illness, or invisible disability, as “a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments.”

To quote The Invisible Disability Project, examples of invisible disabilities “include, but are not limited to: cognitive impairment and brain injury; the autism spectrum and its physical manifestations; chronic illnesses and diseases like MS, chronic fatigue and chronic pain, autoimmune compromise, fibromyalgia; hearing and visual impairments; ADHD; learning disabilities and dyslexia; and emotional / mental challenges like depression, bipolar disorder, and PTSD.”

A photo depicting many people crossing the road
Credit: Ryoji Iwata

How many people have invisible illnesses?

There are 13.9 million disabled people in the UK, which is around 1 in 5 people. The vast majority of these disabilities are invisible – around 96% of them, in fact.

As many of you will know by now, I live with an invisible illness called EGPA. This is a type of vasculitis, which is, in my case, mostly invisible – unless I use my walking stick or a wheelchair.

You can read more about my experience with a walking aid, but I’d leave it until after you’ve read the interview below!

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Credit: Bill Oxford – Unsplash

Discrimination with invisible illness

Because so many disabilities and illnesses are invisible, a lot of people struggle to understand them. This can lead to stigma.

It’s even proven that people with disabilities are institutionally set up to fail. If you want, click the following hyperlink (which will open in a new tab) to read some facts about ‘invisible me.’

  • Disabled people are 50% less likely to hold any formal qualification compared with non-disabled people. (University of St Andrews)
  • Disabled people are more than twice as likely to be unemployed as non-disabled people. (Scope)
  • After housing costs, the proportion of working age disabled people living in poverty (28%) is higher than the proportion of working age non-disabled people (18%). (Scope)
  • 1 in 3 people see disabled people as being less productive than non-disabled people. (Scope)
  • The Papworth Trust report says more than 20 per cent of disabled people have experienced harassment in public because of their impairment. There are increasing reports in the press of disabled people being attacked by those who don’t perceive them to be disabled, or “disabled enough.” (Enable Magazine)
  • In a survey commissioned by disability insurance specialist, Fish Insurance, 39 per cent of people said someone who displayed a valid Blue Badge but did not appear to have difficulty walking should not be entitled to park in a disabled parking bay. (Enable Magazine)
  • A further 18 per cent thought even blue-badge holders who displayed some difficulty walking, such as those with a limp or prosthetic limb, should not be allowed to use disabled parking facilities. (Enable Magazine)
a photo of a child smiling, being splashed by a sprinkler
Credit: Mi Pham – Unsplash

What’s it like living with an invisible illness?

I spoke with a range of people about their experience living with either invisible or chronic illness. Film director and film score composer Nicole Russin-Farland spoke about the impact of diabetes on her life, and how she has managed to live symptom-free for many years now.

Environmental psychologist and wellbeing consultant Lee Chambers talked about his experience with Rheumatoid Arthritis, while Vasculitis UK Trustee and Support Group Administrator Zoi Anastasa contributed her experience of Vasculitis. I particularly hope that Zoi’s contributions can provide a broader context of vasculitis for my regular readers!

I would also like to thank my anonymous contributor for speaking with me about their experience of Multiple Sclerosis, and my friend Laura who came forward about living with Endometriosis.

In this interview, I have used the contributors’ first names followed by their condition. This is not to define the contributors by their condition, but for ease of reading and understanding.

Two people sat for an interview
Credit: Christina @ wocintechchat.com – Unsplash

The Interview

What is your chronic illness, and how does it impact your life?

Laura, Endometriosis: My chronic illness is endometriosis. This is when “tissue similar to the lining of the womb grows in other places, such as the ovaries and Fallopian tubes.”

It’s associated with pelvic pain mostly and painful periods, but it’s by no means limited to that.

I was going to say that often it doesn’t impact my life, because I thought of it as not impacting me every day, but it does. I am not in pain every day, but I do have to take medication every day in an attempt to manage the condition and that impacts my body and mood.

Endometriosis can also, and in my case has, impact fertility. It might not mean a lot to some people, but is huge and life altering for others.

Some days I will be in a lot of physical pain, sometimes all day and I’ll find it difficult to do anything at all and be constantly uncomfortable.

Sometimes it will just be for 10 minutes or an hour. It’s the unpredictability that can make the condition difficult to manage.

The pain itself can also be really unpredictable. The thing that frustrates me most about endometriosis is that even when people have heard of it, they don’t know it in all its forms and all the pain it can bring.

The tissue doesn’t always grow around the lower abdomen and reproductive system, diaphragmatic endometriosis is when tissue grows around the diaphragm, causing pain and even breathing difficulties. I often find the pain around my chest shoulders far worse than pelvic pain.

Lee, Rheumatoid Arthritis: I have rheumatoid arthritis, and my immune system attacks the connective tissue in my joints.

This leaves me with a level of stiffness and pain which is worse in my knees. There are certain positions I struggle to get into, so I have adapted them to work for me.

I have learned to walk again, so things seem very positive as I have good mobility. I have optimised my nutrition, sleep and movement to give me the best long-term health outcome possible.

Anonymous person, MS: I have MS. As it has begun to impinge on my life, it has become a constant companion.

It is easy to start limiting yourself ‘that might be awkward’, ‘I’d rather not’, which is important to recognise and confront.

It has caused changes in my lifestyle and diet. These are all to the good – mainly a low saturated fat balanced diet and exercise.

These are things that should be looked as advantages. I never would have changed my lifestyle so radically without cause.

Signs on a metal fence which say 'don't give up, you are not alone, you matter'
Credit: Dan Meyers – Unsplash

What does chronic illness mean to you?

Laura, Endometriosis: I don’t think I know what chronic illness means to me. I think for people with chronic illness it’s just part of life.

It’s mostly normal, it’s frustrating and tiring, but routine. When I think of my friends with chronic illnesses, though, I think of them as strong and determined. So, maybe that?

Lee, Rheumatoid Arthritis: To me, chronic illness means a condition that I own, and that I manage. It does not define me, yet it is part of me.

It is part of the journey and story of my life. My chronic disease has helped me grow as a human being.

Nicole, Diabetes: You have to continuously care for yourself, or one bad decision leads to you feeling physically ill. Feeling physically ill makes you sad.

Being sad makes you believe making a proper decision to help bring your physical health back up isn’t worth the trouble. You keep making poor choices. Pretty soon you are in a spiral of negativity and bad health choices you cannot get out of.

Photo of a person leaning their head on another person
Credit: Toimetaja Tolkeburoo – Unsplash

What would you like people without chronic illness to know about it?

Laura, Endometriosis: I think every chronic illness is different for every person, and I don’t think that’s something a lot of people realise.

Two people with the same illness can have totally, completely different experiences and need different things and treatments.

I know I find from personal experience that even relatively knowledgeable people are often surprised by some symptoms!

Nicole, Diabetes: Sometimes you are already having a bad day. Someone acts extra mean to you. It suddenly makes your bad day worse into a black hole vibe.

Lee, Rheumatoid Arthritis: That it can be challenging, and yet it is prevalent. Many people have invisible chronic illnesses, and you wouldn’t know just by looking at them.

I present as a fit and healthy individual, and have an acuity to that. A little bit of kindness and non-judgement goes a long way. Behind closed doors, many of us struggle to make the best of our challenges.

And chronic illness is not something that has boundaries. It can affect or impact anyone on this planet, at any time.

My own journey has taught me the value of my health and the gratitude that I have had opportunities to help me get a better quality of life.

Anonymous person, MS: Some people just don’t get it. They can’t comprehend what not being able to do something is actually like.

I wouldn’t want them to be in the same boat, but to be able to make them understand what it’s like to live with an invisible illness would be nice.

a photo of three friends talking
Credit: Priscilla Du Preez – Unsplash

What comforts you when you struggle with an invisible illness?

Anonymous person with MS: Alcohol? No, really, knowing there are others dealing with much worse and I should be thankful for what I do have. And that, however imperfectly, I’m doing what I can.

Zoi, Vasculitis: 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).

A picture of someone holding their hands to their face
Credit: Gemma Chua-Tran – Unsplash

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

Anonymous person with MS: When people, knowing I have a limitation, or upon being told, instead of modifying what they want to do in a particular circumstance, they modify how I can be involved so they don’t have to change.

For example: I find it difficult to walk much more than a mile and a half. A work outing was nevertheless planned to walk to Cawsand.

When I said I couldn’t, the answer was to put me on the boat with an older colleague who would also find it difficult due to a knee injury.

So, we missed what was the point – to team build on the way. No thought was given to changing the destination, or for that matter for us all to get the boat there.

So, being excluded by others not really being bothered. And believe me, I had voiced this beforehand.

Zoi, Vasculitis:

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.

Nicole, Diabetes: Of course, a stranger is always convinced all I need to do is follow whatever advice he or she read online, or some relative of theirs lost half of his body weight and all went well.

The same people who hate on Goop for dispensing medical advice will come up to me telling me all kinds of things… sounding a lot like Goop. I ignore them.

It’s my business, and really please, your uncle eating four pancakes instead eight daily, who had diabetes for a year “reversing!” it with magic vitamins, is unrelatable to my situation.

Interviewees

Once again, I’d like to thank all my contributors for speaking about chronic and invisible illness. Do you live with an invisible condition? Let me know what you think in the comments below!

Lee Chambers, 34, Preston, UK – Environmental Psychologist and Wellbeing Consultant.

Website: https://www.leechambers.org

Twitter: @essentialise

Zoi Anastasa

Twitter: @ZoiAn2

Website: www.vasculitis.org.uk

Nicole Russin-McFarland

Film director and film score composer

Website: http://CinematNIC.com

Want to find out more? Take a look at my last blog, ‘What is the impact of chronic illness on an individual?’

An infographic which lists the discrimination figures of invisible illness listed above
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