How do you find the strength to get yourself up and going when suffering from a chronic, rare or genetic disease/disorder that is little known or has no cure? One that causes pain, weakness, exhaustion, depression, dislocations, nausea, dizziness, migraines, to name but a few?
How do you keep a job, get to work or run your own business when you suffer from chronic migraines?How do you survive when you can hardly climb the stairs of your home, if you have one?How do you keep the hope, not give up and keep going when your body breaks down every day?How do you manage your relationships, your social life, business, networking, errands, grocery shopping, doctors appointments, physio, treatments and the lot?How do you manage to live and have a life?
These are questions between which lines hides the reality of millions of people suffering from autoimmune diseases, genetic disorders or conditions, chronic fatigue, fibromyalgia, Myalgic Encephalitis, Lyme disease and not only. Ailments and conditions that with some exceptions may not be life threatening but do cause differing degrees of disability to the individual. Sometimes people manage to keep working, sometimes they don’t. Some keep their independence, some have to rely on others.
It is when the disease/disorder gets to the point of robbing one of their ability to survive on their own that things can get pretty ugly and depressing. The threat to livelihood is constant and brutal, independence gets snatched and people in this situation find themselves at the mercy of their predicament.
One might ask, how does this differ from the millions of people suffering or dying from various diseases every day? There is only one difference and that pertains especially to those suffering from rare or little known diseases or disorders. The difference is that someone with an invisible disability is not considered ‘sick’ by their social environment and is expected to be able to pull through like the rest of the people when they can’t.
This is why you see people reacting angrily and lashing out at people who may park in the disabled parking spot and come out of their car walking. They get verbally attacked, threatened and judged by the ignorant part of the population who have never heard or considered that not all disabilities are visible.
Are people with heart failure or Dysautonomia easily identifiable? No. Can people suffering from Ehlers Danlos syndrome, Lupus or Chronic fatigue be spotted? No. Yet all of these people may suffer from serious degrees of disability that may make it tremendously difficult for them to walk more than a few steps or carry more than one bag of groceries or climb a few steps.
If you ask people suffering from invisible disabilities, they might tell you that the most debilitating aspect of their disease/disorder is that it is invisible, rare or little known and that they constantly face ignorance and harassment from their environment. Starting from the medical world, to their family and friends and ending to the wider society. Having to explain oneself 24/7 and educate your doctors, loved ones, and people in your social environment about your condition is not something people with known diseases have to go through.
The fact that you are still breathing and can talk or even worse, dare to laugh or enjoy the good moments, automatically makes people put you on the stand and crucify you.
“ You must be doing really well, I saw you zooming at the store yesterday!”
“You look good, you don’t look sick, why can’t you find a job?”
“ You can walk, you have no cancer, so why are you complaining?”
These are but a few examples of the things you may hear when having an invisible disability.
They may not know that the reason you walk fast is not because you have the energy but because standing or walking slowly causes so much pain to your spine that the only way to make it to the store and do your shopping is by zooming in and out at a fast pace. They may be unable to fathom that you may look good when they see you, but for the last week you had a continuous migraine that lasted for four days and nights and it took you another two to recover!
They might not realize that you are not complaining but simply answering honestly to their question of “ How are you?”, that you are simply being honest and stating facts. For healthy people hearing the reality of a person with an invisible disability may sound like too much to bear. They have their own issues to deal with and may feel overwhelmed by that reality. People want to hear only positive things, uplifting things, happy, joyful things. They do not want to hear about the zillion ways in which your day may be screwed up due to your disease or disorder.
They begin to avoid you like the plague or perhaps more discreetly, spacing out your encounters. If you want to be able to socialize, you quickly learn to shut up and lie with a smile. Pretend everything is all right. Push and pressure yourself for their convenience. Talk about the weather or whatever interests them and keep your stuff inside, thus having rather unsatisfactory and meaningless conversations and ending up feeling even lonelier than alone by yourself.
So how do you manage not to feel like a burden, a reject, an alien? How do you deal with the shame, the guilt, your own overwhelm? How do you deal with anxiety and depression? The possible chronic pain? Feeling sick, throwing up, having your guts wanting to kill you?
Perhaps these are the questions people who have friends and family suffering from invisible disabilities should try and ask them. Show some genuine interest and compassion. Try and find out how they cope and what could make their lives easier. Most of all though and the thing that is of utmost importance is to never ever question the reality and honesty of a person with an invisible ailment. Treat them with respect. Work with them on their good days as well as on their bad days.
They will gladly tell you what helps and what doesn’t. You can be certain that they will do everything they can to enjoy your company and/or make you happy. They will make every effort possible. If they tell you they cannot do something, you can rest assured that they only say that after they have already done their best to try and do it.
If one day you see them walking and the next they tell you they cannot get out of bed, believe them. This is the nature of some of these ailments. There are bad and good days, some better or worse than others, but the range can be extreme and that is what is different from a ‘normal’ person and makes it so incomprehensible and difficult to live with.
People who have to battle with a healthy looking yet failing body every single day have learned to live with it, they have adjusted the best way they can. They have their ups and downs, their good days and their bad days and sometimes their lives may become sheer, living hell.
They live for the relief, for the good days, for the sun that will rise again in the morning, for the beauty they can find in nature, in your smile, in your company, for the love. For the moments they can feel useful, contributing to this world, expressing themselves, sharing their talents and capabilities. For the hope of a cure, a treatment to bring some relief. For feeling normal and healthy, strong and happy. Like any other person that is sick or suffering.
That is what keeps them going. That and your belief in them, your not giving up on them. They fight hard to not give up and a simple “Am here, I see you, I believe you, I feel you” can mean the world to them. Can make the difference of them falling flat on their face or pulling through.
Yes, they are not like you, they cannot do everything you can do, but they can do quite a bit and that bit may be enough or more than enough. Yes, life or friendship with them may not be all fun and laughter but they may have more humor than you do. They may be frail yet they are stronger than you think. They will stand as rocks supporting you in your own struggles because they know how it feels.
They are not afraid of the hard stuff, you can talk to them about anything, they won’t fret. They may take no bullshit because they may not have the stamina to deal with it, but you can be sure they will be honest. They have no time or liking for the superficial, the fake, the inauthentic. Pain and suffering has a strange way of cutting through the crap. If they are hard on you it is because they are hard on themselves.
People with invisible disabilities manage to live and keep going because as Winston Churchill said
“ If you are going through hell, keep going”.
You can read people’s stories in The Mighty like this one, that describe the reality of invisible disabilities very well: