Although sprinkled with sarcasm and tongue-in-cheek jabs, the point of this blog post is not to shame or punish anyone who does what I am about to point out. But instead, to educate those who have an incurable friend and restore relationships that may have been hurt by incurable illness misconceptions.
Your incurable friend would like you to know a few things about living with a chronic illness. The first is that we love you and want to spend time with you, but if you continue to do the things listed in this article, we may have to distance ourselves from you.
Some of what I have to share may sound familiar. In fact, your friend may have already shared a point or two with you, but you being the expert on healing people, didn’t think your friend knew what they were talking about. Or it might be that you need to hear another point of view on the subject because you believe others know your friend’s body better than they do.
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What Incurable Means
I used to think the term incurable was self-explanatory. However, ever since receiving my first incurable diagnosis in 2001, I have learned that there are very few people who actually understand what this word means.
Definition of Incurable
The definitions provided above are pretty clear. Incurable means no cure!
I often wondered if it was the term chronic illness that threw people off. If that in their minds, it isn’t as bad as having a terminal disease. But that theory was blown out of the water when I witnessed friends and family offering crazy cures to people with terminal illnesses!
Whether it be a chronic illness or terminal disease, the definition is the same. Incurable means NO cure.
Living with an Incurable Illness
To live with an incurable illness like fibromyalgia, autoimmune arthritis, psoriasis, and endometriosis (to name a few), is to live with them until the day we die. We can hope for a cure, but we can’t live like one will be found in our lifetime.
Living with an incurable and chronic disease means never knowing how we will feel from one day to the next. It’s having good and bad days, weeks, months, and years.
It is a lifetime of experimenting with different medications and natural remedies with only the hope of relieving pain and symptoms. With some illnesses, remission, which is not to be mistaken for a cure, is possible.
Living with an incurable disease is having friends, family, and even complete strangers offer “expert” advice on how to heal ourselves. It’s having people tell us everything they think we are doing wrong, about how someone else was healed after traveling to the Dead Sea and being reminded of how much better our lives would be if we weren’t ill.
Treatments are NOT Cures
Some people understand that their friend is incurable, but misunderstand how treatments for their illness works. Having an incurable illness is not the same as being allergic to pollen and taking an allergy pill to eliminate my symptoms.
What Chronic Illness Treatments Do
Whether your friend treats their illness with pharmaceutical, natural, or a combination, a cure is never the result.
Here is what patients and their friends and family can expect from an incurable illness treatment. Keep in mind that although expected, treatments do not always address each point. For many cases, the relief is partial or limited.
- A reduction of pain
- Fewer flareups
- A reduction of flare and/or symptom severity
- Decreased progression of the disease
In some cases, only one of the above is expected. The purpose of some treatments is to only slow down the progression of the disease.
What Incurable Illness Treatments Don’t Do
When friends and family go on a “I want to cure you” tangent, it is usually because they want your treatments to do what they cannot do.
They want your treatments to:
- Take away all of your pain
- Eliminate every symptom
- Heal your body
- Return you to who you were before your diagnosis
- Make their lives easier by making you “normal”
Your Incurable Friend Needs a Friend
Your incurable chronically ill friend doesn’t need another doctor. What they need is a friend. Here are a few tips on how to be the kind of friend they desire.
Be a Friend, not a Doctor
Do not criticize their treatment choice unless you see they are at risk of committing suicide. For example, if your friend who has never suffered from depression suddenly shows severe signs, it would be understandable to ask if they have made any changes to their treatment plan.
With that said, how they treat their illness is none of your business unless they choose to share it with you. Do not be offended when someone decides not to share their treatment plan. Friendship does not grant full access to someone’s medical care. The only opinion I care about is that of my spouse. Respect your friend’s choice of how they treat their illness and who they share it with.
How to Make Plans with an Incurable Friend
Friends enjoy each other’s company no matter what they do. They have fun even when their plans go awry. With that said, here are a few tips on making plans with someone who lives with an unpredictable incurable illness.
- Plan according to their current health status.
The chronically ill never know when their next flare will strike. Nor can they predict its severity or duration. One way I decrease the number of cancellations I make is to make plans that cater to my illness. For example, if someone wants to go out to eat and I don’t feel well enough to leave home, I suggest they pick up some takeout and bring it over to my house.
- Follow their lead.
If your chronically ill friend says they want to go out, then go out. Don’t always make plans with their worst physical state in mind. Sometimes we need to get out even if we aren’t really up for it.
- Do not wait until they “feel better”
Call and visit like you would anyone else. But with the understanding that conversations and activities will be different when they are flaring. People who say they will talk to or do something with when I get better, become less of a priority. I need to be good enough to be around even when I am not well or able to function like the average person.
- Respect their choice.
Do not push your friend to go out. Reminding us that we will hurt whether we stay home or not doesn’t matter because while true, there are levels of pain that others will never experience or understand that makes us lean towards one option or the other. Another reason may be that we have something important planned that triggering a severe flare would disrupt.
- Talk to them.
Do not assume you know what is best for your incurable friend. Ask them to share what activities or outings are the least painful. Let them know that you care for and respect them.
Becoming friends with or nurturing an existing friendship with someone who has an incurable illness is not easy, but it is doable. Just keep in mind that no person, product, treatment, or medication will heal them. Their lives are different, and that’s okay.
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