Unless you are brand new to this blog, you’ll know that I often refer to ‘Invisible Illness’ or even ‘Invisible Disability’. I feel like my purpose is to lend a voice to all the people who suffer, in plain sight, with no one seeing what’s wrong. I want to shine a light on the situations unseen by people busy with everyday life. The last six years have opened my eyes to an entire community within our community. People who fly beneath the radar, struggling, suffering and desperately in need of kindness, compassion and understanding.
Invisible illness is any illness that isn’t visible or apparent. The sort of situation where you have what they call ‘passing privilege’. You can ‘pass’ as normal in a group of people. I am not so sure I would call it a privilege. But if I look at it from the perspective of someone who has no choice but to be identified by their illness or disability, I guess ‘passing’ could indeed be a privilege. But it is all relative.
The problem with ‘passing’ is that no one knows. And if people don’t know you’re struggling, how on earth can people lend an ear, or a helping hand? Worse, how will they know to hold back their impatience, intolerance, their rudeness? I have heard countless stories of people being treated rudely and with a harshness that would be hard to bear even if they were well. How much more soul-destroying such encounters can be when your whole existence is already an exercise in forebearance. Worryingly, just-one-more incidence that confirms people just don’t understand can be the straw that breaks the camel’s back.
Recently over in the States, the Dysautonomia community lost a young lady to suicide. Christina Tournant had POTS, and her final note expressed that she just couldn’t fight anymore. All reports describe her as a high achiever, a great friend, a go-getter. You can see for yourself just how beautiful. She was at home on extended sick leave from university when she took her own life.
It can be so overwhelming, dealing with an illness nobody can see. You might fight for the short times you are upright around others and crash when you can do no more. You might push yourself far beyond your limits because the expectations of others are based on what seems superficially apparent. You seem well, so why can’t you..? Carrying the burden of ‘passing’ can become too great. Feeling like you are falling behind your peers, letting your loved ones down, it’s painful. Fighting your fight out of the sight of the community at large can be extremely isolating.
Sharon recounts a recent bout of severe depression that afflicted her daughter, who suffers with a form of Dysautonomia. Sharon was desperate to find help for her and turned to a patient forum on facebook:
“I asked for help the other day for my daughter who was having, for the first time, waves of shocking depression that were out of her control. The responses I got were heaven-sent. I took her to emergency on Sunday and they were about to discharge her, back to her misery, when I suggested a drug that was suggested by a member here. I am thrilled to say that it worked a treat and the doctors were shocked. Sunday, there was no hope and on Monday, there was light again in our lives. So, we all learned that you NEVER GIVE UP….you never know what tomorrow will bring. Now we know what depression is really like. That you need to just sit and hug the person and let them know that they are not alone”.
Ana experienced such depression first hand when she was admitted into residential care. “Ever since I can remember I have not wanted to be dead. But having an illness that no one understood, being so frustrated with its variability at a moments notice, and not being able to properly be a mother, I considered suicide. More so to enable my husband to then be “free” to have a proper wife and the kids to have a proper mother. But then two things happened. I began to see a psychologist and I discovered an activity I could do with my limitations. I began to sea-kayak when I could. I remember spontaneously laughing for the first time in 5 years when I had waves roll over the bow and crash into my chest. It was the best! I felt so free and alive, at one with nature. This was a major turning point in my life”.
We are so fortunate to have access to professional psychological help (see my post here about how to access this if you are in New Zealand) and there are additional wonderful supports available for people with invisible illness. I can’t recommend highly enough, like Sharon, finding your people in facebook groups! Finding online forums or patients groups will provide you with the sort of first-hand-experience/wisdom from others who have been where you are. Look for groups with excellent group guidelines to protect against anti-social behaviour. And remember, social media is all about making contributions. Don’t just post about yourself, interact with the posts of others. It is phenomenal the wealth of support, solidarity and good cheer you can find by connecting with others like you.
If you can’t find a group, start one for your area. As wonderful as online support groups can be, having the opportunity to meet up with others in real life is worth the effort. It’s also great to meet locals like yourself because they will have information to share about their own medical journey, the people they see and the pathway they’re travelling. Ask in your online patient groups. Put the word out. Collect names of people living in your locale. Another bonus is that you will have some of your only social encounters built around your needs. There are a group of people here in Auckland that I have met up with. We call ourselves the Auckland Recliners, because that is what we do! Every now and then, we meet in the park, lie around on rugs, bring our own pillows and enjoy the respite of complete understanding. It’s a beautiful thing, finding your tribe.
Even if you can’t get out to services easily, we have a wonderful telephone help service in New Zealand for people struggling with destructive thoughts. If you are one of the people struggling because you ‘pass’ as normal, if you feel invisible, alone and are thinking scary things, please get help.
Phone Lifeline on 0800 543354. Life with illness doesn’t have to remain a purely deficit situation. There are things about life with illness that can lead you to a more rewarding quality of life. It’s not always easy to see, but connecting with people who can help you is a great place to start.
And if you are not ill, but you care, take time to listen to the answer to “How are you?” next time you ask it. Read the body language of your friends. Approach from a place of open connection. Ask further questions, consider the fact that there are many in our world who suffer in spite of looking well. People endowed with the dubious ‘privilege’ of passing beneath the notice of others. Get to know the people in your circle. Find out. All is not always as it seems.