Supporting People with Chronic Illness

Most of what support consists of when it comes to people with chronic (and often invisible) disease is patience. 

That's it. 

The hard truth is that being ill means feeling alone a lot of the time - no matter how incredible the support system might be. A patient cannot 'share' the sensations or the symptoms with someone else. We can always try to explain procedures, pains, anxieties, and fears, but no one else can actually feel those things with us. Most of the support is before and after a specific event - while feeling entirely alone during the event itself. 

Being a caregiver, friend, partner, family member, or just a nurse holding the hand of someone about to go through something, is difficult. It usually entails watching that person endure something while you wait, helplessly, for the after-care. It means offering a hand and waiting. Waiting for them, waiting with them, waiting for instructions or guidelines, waiting to be able to do something that feels helpful.

The level of helplessness and the amount of time spent just waiting is something a person never quite gets used to - but that is most of what support with illness is. It is a ton of waiting room chairs and listening to symptoms. It's sitting in multiple waiting rooms and enduring exchanges between the patient and nurses, doctors, med students, and booking clerks. It's having your phone on you just in case there is a problem. It's dropping off and picking up your loved one from difficult procedures, knowing you can't help in a physiological sense. It's lending a hand, lending an ear, a desire to understand what certain symptoms mean, what certain medications do, how they help, and noticing changes that the patient may not be aware of. It is being observant and (very literally) just being present. 

You may never be able to feel exactly what someone else is feeling, but being physically there or waiting for a phone call after an appointment - showing you are willing to sit and wait patiently - is the most effective kind of support that there is. 

Just knowing that someone is willing to be bored, uncomfortable, or is willing to wait by the phone and do whatever it takes to make a patient feel like a priority is one of the best ways to show support. 

Patients with chronic illness tend to feel alone most of the time. We are alone in our own bodies, just like everyone else. 

 We have dealt with our symptoms and complaints being entirely dismissed, we have felt trapped, we have felt crazy, we have second-guessed every pain and every symptom change, and we have endured endless criticism and scrutiny. 

We have a life sentence with our illness, and we are alone with it every second of every day, so having someone want to be a part of this and just existing next to us is, frankly, a blessing. 

There is no set of guidelines that fully explains how to be supportive of someone with illness - because every person's experience is different - but my best advice is to learn how to be patient. And maybe learn to love waiting rooms.