We all know that hypochondriac. That is not who this letter is about. It is not easy to watch a loved one suffer, even more difficult when you just don’t understand. To often our fear and lack of understanding can build. As a woman, fortunate enough to have lived on both of sides of this, I feel I have unique perspective and advice to offer.
1. Only ask how a person is, when you truly feel like hearing how they are doing. It is exhausting to truly listen and understand about someone’s life with chronic illness. We can only begin to imagine how exhausting it is to actually live it. When you are not up to it, It is ok NOT to ask how someone is doing! Truly understanding what a life, prognosis, treatment, etc is like will often leave the listener feeling sad, confused, and wholly having no clue what to say. It is ok if you aren’t emotionally up to talking about it. Quite often the person living it is not up to talking about it either. But when you can, when you have the heart, time, and stomach to ask and listen, that asking and true listening will mean more than words can express.
2. Instead of telling them how good they look, tell them how glad you are to see them. Invisible illness is just that. Invisible. You rarely see the scars physical, mental, or emotional. This makes it difficult for people living with these diseases. They are daily fighting for their futures, their lives and some manner of normalcy. If a person with an invisible illness is out and with you, then something else in their life has been placed in the back burner. You are a priority to them. The fact that they are with you in that moment is huge. Dinner wasn’t cooked, laundry wasn’t done, and they may pay for it for days. A simple “thank you for being here” means that you appreciate how much their effort took and what it says about their love for you!
3. These are proud people. They don’t want you to see their scars. The saddest part of invisible illness is it seems to strike those who are passionate in their lives and careers. They are marathon runners, doctors, nurses, therapists, business developers, mountain climbers, and more. If you are seeing them, it is because they really want you to. It is a GOOD day. Which is horrifyingly strange phenomenon when a good day used to constitute kicking butt and taking names like no ones business. Everyday is like learning to live again, as the rectify the life they now have to the dreams for the one they used to live.
4. Answers aren’t easy and cures rarely exist. Like many diseases, invisible illness ones can be convoluted, political, and are ALWAYS desperately under-researched. Without proper understanding, funding, research, and medical information a cure will never be possible. Instead of suggesting treatments, telling anecdotal stories, etc, read the research available about the illness your loved one is facing.
5. These illnesses can be fatal. While not everyone who experiences invisible illness will die, some do. We have all know that one person who dropped dead one day looking so healthy and vibrant the day before. Silent, invisible killers like Heart, Chrone’s or Lyme disease, endometriosis, depression, PTSD and others are real and demand our attention before they take more loved ones.
Living with invisible illness leaves the sufferer as well as their support system depleted, confused, scared, and on edge. We are often left wondering what can we do?
- Ask how someone is, but only when you can listen.
- Offering someone with invisible illness a meal is like the biggest hug in the world and winning the lottery. It gives you time, energy, healing nutrients, and the feeling that someone gets it! Healthy food makes all the difference. Not only is this a great way to support them but also their caregivers.
- Understand when they can’t follow through on plans. Invisible illness may follow a pattern but is rarely predictable.
- Check on their care givers! Remind them they are human to. They spend their lives steeped in medical terminology, crushing diagnosis’s, and emotional upheaval. They need a break! They need to know someone is caring for their loved one so that they CAN take a break.
- Be private with the information they share with you. Do NOT share their medical issues. They are not yours to share. Most of those who suffer from this disease are proud, and while they are desperate for someone to understand what they are facing, they do not need the world to know their embarrassing, exhausting medical issues. Show your support through sending positivity and prayers, listening, providing a meal, or a laugh.
- If you work in a place that allows sick leave donation, and you are able to do this, this not only provides a paycheck, access to insurance, and peace of mind. I was so blessed to have weeks!!! WEEKS 😍donated to me by my fellow teachers. This was the difference between paying bills and not paying bills. Treatments for these illnesses are very expensive and rarely are covered appropriately by insurance.
- Take an activity to them, if they are up to it! Tea time conversations or a movie can be great ways to provide distraction. Just remember not to overstay your welcome. Visiting takes healing energy as well as giving it.