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8 Things That Lie Beneath the Surface of Life With Chronic, Invisible Illness

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There are plenty of things I want to tell people about me but don’t get the chance to say. Things I want people to know if they’d only look past the surface to what can’t be seen. The chronic pain, the chronic illness and the difficulties in the day to day that have changed my life forever. Here are just a few of those things that many of us with chronic, invisible conditions may be feeling.

1. Not all is what it seems.

From the outside, you’d say I’m a healthy, happy young woman who looks “fine.” Look beyond what your eyes tell you and you’ll find chronic illness and chronic pain that have taken a toll on my life over the years.

An invisible illness is a condition or disability that’s not easily discernible or visible from the outside. You don’t have to look sick. Chronic illness means it’s long-lasting. It can come in a myriad of forms, both mental and physical. Each condition will have a sliding scale from mild to moderate to extreme, accompanied by a potentially endless list of symptoms.

2. I didn’t choose this.

My health problems started almost overnight when I was 19. Things were finally starting to go well in my life and I was busy with work, a relationship and a social life. I had hopes for the future. Then, I got ill. It took years of going from one doctor to the next, trying to find someone to listen and take me seriously. I was fobbed off so many times and given the most ridiculous reasons and suggestions. I was made to believe it was in my head, that it was my fault, that I was too young to have anything wrong with me. Fast-forward 10 years and here I am, learning to live with the consequences.

I’ve had four surgeries and I’m waiting for a fifth. I had an initial surgery that didn’t go well, from which I’m still suffering. I’ve had a colectomy and end ileostomy, so I have a stoma bag and no large bowel. I have pernicious anaemia, chronic Vitamin D deficiency, Raynaud’s phenomenon, fibromyalgia, undifferentiated connective tissue disease and osteopenia. Even with these things, I know I’m still lucky, I know others have it worse than I do. But I also know that comparison doesn’t help you or the next person; after you get a little perspective, comparing your situation can often just make you feel weak or guilty. Your experiences are uniquely your own. There’s no comparison and you owe no apology for what you’re going through.

3. We can be “greedy.”

For many with chronic invisible illness or pain, it’s often not just one condition. I have a stoma and often that’s all medical professionals see. But it’s far more than that. It’s fibromyalgia, chronic migraine attacks, chronic fatigue, nerve damage and chronic pain, lung scarring and bronchiectasis, widespread inflammation, undifferentiated connective tissue disease, osteopenia, Raynaud’s phenomenon, erythromelalgia and so on. To tell you what’s wrong may result in a shopping list because sometimes chronic illness is an unwelcome gift that just keeps on giving.

4. It can be a lonely place.

With no one else able to see your health problems, invisible illness can become a lonely experience. Your body can become a prison and when others can’t understand what you’re going through, let alone appreciate the emotional impact, it can become very isolating.

I’ve found the internet to be a wonderful place and a fantastic resource. Not only did it help me to educate myself and finally get the help I needed when I saw a doctor willing to listen, but it opened up my world. Support forums, Facebook groups, information sites and blogs mean people can share knowledge and experience. It means you’re not alone, that you are still a vital part of the world around you.

5. The reality of stigma.

Both mental and physical illnesses can be vastly misunderstood and underappreciated. The result is ignorance, prejudice, stereotypes and stigma. Even when it’s not directly aimed at you, there are feelings of worry and anxiety about what others think. For instance, when it comes to the likes of chronic fatigue and fibromyalgia, the preconceived notion that those living with them are probably unable to leave their house, if not their bed, can make you feel like a fraud for even leaving the house, let alone doing something enjoyable. If you put effort into your appearance for an afternoon out or are caught smiling, well, obviously there’s nothing wrong with you. Wrong. It’s actually incredibly important to prioritize self-care and to try to be a part of the world, to live your life as best and as fully as you can.

Every day can be different; every hour, even. Some times will be good, some tolerable, some painfully challenging and some downright awful. Judgment and ignorance only make a heartbreaking experience all the more difficult.

6. It’s just not that simple.

The very nature of invisible chronic illnesses often makes them incredibly hard to diagnose. Sometimes there’s a firm diagnosis with a suggested treatment pathway. Sometimes there’s not. Conditions don’t always come neatly packaged with labels and causations. Sometimes they simply are the way they are, seemingly without rhyme or reason.

What works for one person when it comes to treatment doesn’t necessarily work for the next because it’s not a one-size-fits-all kind of deal. Similarly, just as there’s no one way of treating a condition, there’s no one way of managing it either, which is often all that can be done for many illnesses. There’s no rulebook or timeline for how to react or cope.

7. The perils of advice.

It may come from a well-meaning place, but common sense suggestions can be difficult to swallow sometimes. Drink more water, join a gym, try Vitamin D supplements, increase your fibre, get more sleep and you’ll be right as rain tomorrow. Such suggestions often serve to reinforce the feeling that others just don’t understand. Please don’t be offended if we’re offended, frustrated or simply don’t take certain suggestions on board. General tips have usually been implemented, we’ll have tried countless things, and we know what doesn’t work.

8. Being positive doesn’t come naturally (to me).

I don’t think I’ve ever been one of those people for whom a positive disposition comes naturally. I struggle with anxiety and depression, which are common alongside invisible physical conditions. I’m still learning to adapt to life with a stoma and with my diagnoses; I’m still learning the ropes of dealing with this life that’s so different to what I’d ever anticipated it would be. I’m working toward acceptance so I can focus on management, but it’s not easy. Some days, I manage my health somewhat well and I’m quite positive; other days, I don’t and I’m not. I’d say it’s more the latter but it’s all a learning curve. And I struggle greatly with taking my own advice. I’ve lost a lot through invisible illness and the more recent surgeries, further compounded by depression: any sense of social life, friends, my job, hobbies, self-confidence. The best support for someone with a chronic illness is often to simply be there, and not give up on us.


Follow this journey on the author’s blog.

Photo by Allef Vinicius on Unsplash

Originally published: May 19, 2020
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