How I'd Like Others to Treat People With Invisible Illness

How do you find the strength to get yourself up and going when suffering from a chronic, rare or genetic disease or disorder that is little known or has no cure? How do you do this when it causes pain, weakness, exhaustion, depression, dislocations, nausea, dizziness, and migraines, just to name 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, physical therapy, treatments and the lot?

How do you manage to live and have a life?

These are questions between the lines that hide the reality of millions of people who are diagnosed with autoimmune diseases, genetic disorders or conditions, chronic fatigue, fibromyalgia, myalgic encephalomyelitis, and Lyme disease. These are 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, while 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 often 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 struggling 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 who have Ehlers-Danlos syndrome, lupus, or chronic fatigue be spotted? No. Yet all of these people may have 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.

If you talk to people with invisible disabilities, they might tell you the most debilitating aspect of their disease/disorder is that it is invisible, rare or not well-known. They might say they are constantly faced with others’ ignorance or have even experienced harassment because of it — starting from the medical world, to their family and friends, and even in society in general. Having to explain oneself 24/7 and educate your doctors, loved ones, and people in your social environment about your condition is not something that is easy to do.

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, denying your struggles.

“You must be doing really well, I saw you zooming at the store yesterday!”
“You look good. You don’t look sick, so why can’t you find a job?”
“ You can walk, you don’t have 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?” 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 seem to 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.

Then, sometimes 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 — pretending everything is all right. Sometimes, you might push and pressure yourself for their convenience. You end up talking about the weather, or whatever interests them and keeping your feelings to yourself. The result is usually a rather unsatisfactory and meaningless conversation, that can end 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 and the guilt? How do you deal with anxiety and depression? The possible chronic pain – or feeling sick, throwing up, having your guts wanting to kill you?

Perhaps these are the questions people who have friends and family with 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, 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 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. The range can be extreme, and that is what is different from a “healthy” person and can make it so 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.

Like any person with an illness, they live for the good days, for the sun that will rise again in the morning, for the beauty they can find in nature. They live to see your smile, to be in your company, for the love others have to offer. They also cherish the moments they can contribute to this world, express themselves, and share their talents and capabilities. They hope of a cure or a treatment, to bring some relief. They long to feel normal, healthy, strong and happy.

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 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 usually still have a sense of humor. 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 will be honest. They usually don’t make time for the superficial, the fake, the inauthentic. Pain and suffering has a strange way of cutting through that which is unnecessary. If they are hard on you, it is often because they are hard on themselves.

People with invisible disabilities manage to live and continue on because as Winston Churchill said, “If you are going through hell, keep going.”

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Getty Images photo via SonerCdem