That’s right, another awareness week. But this one is close to my heart, and reflects why I started this blog – InvisiblyMe – which was borne from my experience with chronic invisible illness. You can find out more about Invisible Disabilities Week on the Invisible Disabilities Association website here.
As I write this, I’m in agony & I’m exhausted to my bones. While my brain is foggy, it’s a little better than this morning so I’m taking the time while I can to put something down in writing. To look at me, you’d say I look fine. And therein lies the crux of invisible conditions.
A few examples of what I deal with: stoma (ileostomy with colectomy), chronic pain, fibromyalgia, osteopenia, chronic fatigue, immune system issues & various deficiencies, specific localised pain from nerve damage, chronic migraines, anxiety, urinary issues, bronchiectasis, Raynaud’s & erythromelalgia, Pernicious anaemia, and so on.
Stomas – The Visible But Invisible Condition. What you don’t see are the problems I’ve had with the stoma, the challenges it throws up, the affect it can have on confidence and mental health. You can’t ‘see’ any of the other conditions or chronic pain.
Sick Enough Yet?
Put On A Smile, Brush Your Hair, And You Look Fine.
I can still say I’m very lucky; I have a lot to appreciate and there are ‘lots of people who are far worse off than I am’. While standing back and getting perspective can be beneficial, comparing what you’re going through often has the opposite effect, leading you to feeling guilty, awful that you don’t cope as well as you think you should, ungrateful when you’ve been feeling down. Every one of us has our own unique experience. It can’t be compared.
What Are Invisible Illnesses/Disabilities?
Chronic, as opposed to acute, is a long-term deal. It’s ongoing, it’s not something one ‘gets over’ like a cold. They are conditions that are managed on a long term, ongoing basis. Such invisible, chronic illnesses can range from mild to severe, as can their impact on your quality of life. Symptoms may pose a little or large amount of pressure on your day to day living, being minimally or extremely debilitating.
There are countless conditions that would be classed as invisible, both mental and physical. While the focus is often on physical, it’s worth noting that for many there’s significant interplay between the two. Invisible conditions include the likes of … Autoimmune Disorders / MS / Diabetes / EDS / Sleep Disorders / Digestive Conditions such as constipation, Crohn’s or Colitis / Pernicious Anaemia / Hyper or hypothyroidism / POTS / Trigeminal Neuralgia / Lupus / Chronic Fatigue / Migraine / Depression & Mental Illness / Sjogren’s Syndrome / Arthritis / Intolerances & Allergies / Lyme Disease. The list goes on. And on. And on some more! Many people are greedy and have numerous conditions & associated symptoms to deal with.
How those with invisible illness feel in terms of symptoms can be highly variable even from hour to hour, let alone day to day. And that’s before counting flares.
Problems With Invisible Illnesses / Disabilities
- Fear of embarrassment. Stigma, judgement, being labelled melodramatic or a hypochondriac. With this can also come guilt and feeling like a fraud when we ‘don’t look sick’.
- Unsolicited ‘advice’ or unwelcome, misplaced comments, whether well meaning or not.
- ‘Get well soon’, where there is no ‘getting well’ and getting ‘over’ a chronic condition.
- Difficulty with accessing accessibility. I’ve had snide remarks when using a disabled toilet to deal with my stoma bag. I’ve been told to let the lady behind me, who’d just joined the queue with a walking stick for the disabled loo, to go first because I clearly didn’t have anything wrong with me. On days when I’m about ready to fall over, I have to stand on busy buses, nobody would give up their seat for a clearly healthy person (it’s a bit different if I’m using a walking stick because suddenly illness is made a little more visible).
- Those around you probably think you’re a picture of health, or simply that you ‘look fine’, because you can’t see what’s physically going on inside someone’s body or the pain they feel.
- Resentment and frustration for various reasons, from there being no ‘cure’ and missing our old lives and who we once were, to frustrations over others not understanding or ‘getting it’.
- Guilt, for feeling like we’re a burden or for letting people down.
- Planning can be very tricky given the changing nature and intensity of symptoms and flares. This can have a knock on effect beyond the obvious, impacting the likes of relationships, interests and social lives, and even our confidence.
- Invisible illnesses can be very hard to treat and manage, but often harder still to diagnose. There can be significant overlap in symptoms of different conditions, with no straightforward reliable test. This is the case with things like ME/CFS and fibromyalgia, and can be the case even with various autoimmune conditions.
- It can be disheartening searching for answers, and a nightmare going to different doctors and specialists. As is often the case, invisible conditions can take years to be diagnosed, with patients regularly fobbed off or misdiagnosed. It can be a fight to be heard, to be believed and to be taken seriously.
- This list can go on for longer than the Brexit negotiations, so I’ll leave it there.
Chronic, invisible illnesses can have a marked impact on any and every aspect of life, from employment and day to day activities, to relationships, social lives and mental health. Living with such conditions can be isolating, frustrating and incredibly disheartening, which is why awareness and support are so vital.
It can affect those around us, like friends and family who find it hard to see us unwell. It can affect our social lives, when we’re not able to meet up or have to cancel at the last minute because of our health, and then friends often eventually stop asking. Other ‘friends’ decide we’re too much hassle & negativity, and move on, leaving you behind. We can feel left behind in life, too. What we thought our lives would look like by this point is typically nowhere near the reality. Interests, travel, hobbies and all the things we used to do or enjoy are either limited or go out the window.
When our lives get shattered by chronic invisible illness/disability, it’s then a careful, painstaking process of putting the pieces back together. Working through stages of anger, denial, resentment and grief, and trying to come to a degree of acceptance. Working to put meaning back into our lives, to prioritise, to learn to pace, to find ways around the challenges, to reinvent ourselves and our lives so as to adapt to the current reality of the foreseeable future.
To Speak Out or To Not Speak Out
It’s the fear of embarrassment and judgement, and being discouraged because people will still not understand, that makes invisible illness so difficult to discuss.
Invisible illnesses come in all different shapes and sizes. Despite more people talking out about their conditions, many can still cause embarrassment, like bowel problems, sexual symptoms, pelvic floor dysfunctions, incontinence, or stomas. It can feel humiliating to tell someone about such things, let alone go in to any detail in order to have someone understand the problems you’re experiencing. It’s not enough just to say ‘I have an autoimmune disease’ or ‘I have bowel problems’, because that can never begin to describe what you’re going through. And sometimes, we just want someone to acknowledge what we’re experiencing, because going it alone can be a very lonely place.
To try to get someone to appreciate what you’re going through means sharing the nitty gritty details, the personal things you don’t want to talk about for fear of being looked at differently, for feeling embarrassed or ashamed. No matter how compassionate the other person, I don’t think anyone can really ever fully appreciate your experience because it’s unique to you and only you live it, day in, day out.
Whether and what you choose to share with others, including who you tell both offline and online, is up to you. It’s a personal decision. There should be no judgement. I don’t think anyone should be judged for keeping things to themselves, just like I don’t think someone should be criticised for talking out and being open about what they’re going through. The old adage of ‘if you have nothing kind to say, say nothing at all’ comes to mind.
There is still a lot of stigma, judgement, prejudice, misunderstanding and ignorance around invisible illnesses and disabilities. There’s still a lot of embarrassment, shame and feelings of guilt and self-consciousness. There are still far too many people feeling lonely and isolated with and by their illnesses/disabilities.
I strongly feel that a little more awareness, understanding & compassion can go a long way, and speaking out can achieve several things.
Talking about invisible conditions and our experiences can achieve a lot of things. It may make people think twice before judging someone who ‘looks fine’. It can help those who are suffering with chronic invisible illnesses to write about their experiences and express what they’re going through, to get support from others and/or to give support to those who read or listen. It can help in showing others they’re not alone and give them the confidence in reaching out and getting support themselves.
It can also be a force for real positive change, in our collective way of thinking and in how things are done. It can be big and small, from signs on toilet doors saying ‘not all disabilities are visible’, to changes to the benefits system or more flexible working options for those with such conditions.
If you are dealing with invisible, chronic illness/disability, please know you are not alone. You don’t have to suffer in silence. The online world can be a haven, where you can find your tribe of others going through their own invisible struggles. We see you.
Keep talking, keep respecting the choices & opinions of others. Keep spreading the love & support. Keep bringing awareness & showing that there’s more than what meets the eye where invisible illnesses and disabilities are concerned.