This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Thursday, July 5, 2012

Supporting and Understanding the Chronically Ill Person (and what not to say)

People who live with chronic illness are frequently subjected to unsolicited advice, judgments, and "help" that may be well-intentioned but instead often causes frustration and can actually make life harder.  This "helpful advice" can also lead to feelings of isolation, criticism, invisibility, and anger.  People tend to suggest the most obvious options, which can feel insulting, and offer help or advice that is not relevant, which can lead to feelings of being profoundly misunderstood.  A similar problem is when people are so afraid of saying the wrong thing that they avoid talking or asking about the illness at all, or avoid the chronically ill person altogether.

One concept- the "Spoon Theory"- is a very popular analogy to help able-bodied people begin to understand some of the limitations that chronically ill people face.  Open Letter To Those Without An Invisible Disability Or Chronic Illness is another blog post written to help well-meaning people understand what life with a chronic illness (especially an "invisible" one) can be like.  This is another similar piece Pay no attention to the girl behind the smile -what I wish people knew about me.

Several articles ran recently In Psychology Today about things that people who live with chronic illness want to hear or don't want to hear:

What Those with Chronic Pain or Illness Don't Want to Hear You Say

What Those with Chronic Pain or Illness DO Want to Hear You Say

I think able-bodied friends and relatives so often want to help and be supportive, but simply don't know what to say or how to help.  This is not something that our culture (here in the US) prepares us for.  People often try to talk us out of our feelings ("come on, it's not that bad" or "look on the bright side" or "so and so has it worse than you do, you should feel lucky") or offer advice without asking first if we want to hear it.  We know that this comes from a place of wanting to help, wanting to see us healthy again, etc, but it can get very hard to take.  Above all, what we want is for people to see us how we are, to take the time to listen to how things really are for us (without offering unsolicited advice or judgement), not to assume that because we look okay we must feel better at the moment, to realize that when people see us we're at our best because at our worst we can't go out, and for people to make the effort to accommodate us when possible.

The one example of "what not to say" that seemed to cause confusion as part of a conversation recently, are the variations of "call me if you need anything" or "let me know if there's anything I can do".  I know that I appreciate hearing that, and many people do, in the sense that the person genuinely wants to help out.  However, the offer is so vague that it can really hard to know when or how to take them up on it.  It puts the ball in our court, and honestly our court gets pretty overwhelming and we are likely to drop the ball.  As the articles point out, specific offers or offers with parameters (such as "I'm in your neighborhood every Thursday afternoon, I'd be happy to run errands for you" or "I'm happy to bring you dinner from time to time").  It is very helpful for us to know what kind of help you have in mind, so we know what to feel comfortable asking for.

There is another reason why that question can lead to frustration.  In some cases, it is a sincere offer to do something.  In other cases, it is the person letting you know that they are not going to pay attention to your needs and that they expect you to speak up with them, every single time.  For example, a friend used to invite me over and over to meet her at 9 AM across town. I can't drive, and I struggle to get up in the morning. There is no way this could work and this invitation made me feel really not "seen". There are times when I've explained that I need plans to be flexible, as I never know how I'm going to feel, and the person originally says they understand but then gets frustrated with me when I ask to change the plans. It's emotionally hard to not be able to do so many regular things, and relationships in which the ball is always in our court can be just too draining to maintain.

The frustrations that I've had are common and a lot of people have already written about them.  I am including a list here of writings that explore the topics of giving advice, offering help, etc that can be helpful for us chronically ill people to read (sometimes we find solutions or validation in reading others' thoughts on the subject) as well as links to post or share if you want someone else to get the information:

The Gift of Presence, The Perils of Advice

Here's What it's Like to Live With Chronic Health Problems

What it's Like Living With a Brain Injury

Inside the Mind of a Chronically Ill Person Debating If They Should Post on Facebook

A Cancer Survivor Designs the Cards She Wishes She’d Received From Friends and Family

Lessons I’ve Learned As the Partner of Someone with an Invisible Disability

I Just Woke Up From my Caregiver Coma, and it Hurts Like Hell

Dear People Who Do Not Have a Child With Disabilities…
This is written from the perspective of a parent of a child who has special needs, but what she has to say is just as applicable to people with chronic illness themselves.  Many of us also do have children with various special needs so this post does double-duty.

"At Least it's not Cancer"

Everything Doesn't Happen for a Reason

Stupid Phrases for People in Crisis
(This specifically addresses advice and phrases that are Christian-based but probably applies to people of other faiths as well.  It offers alternatives of things to say that would be more helpful and why these phrases, even if the speaker believes them to be true, may not help in a given situation.)

Is some advice a form of violence? A question for helping professionals—and friends

Don’t lie to disabled children

Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses
(this is more of a research article, but it may help people who are not chronically ill to understand more about the struggle that many of us go through to get care, and why certain comments from friends and family may be so hurtful.  This is especially true for people with "controversial" diseases such as Lyme Disease, Fibromyalgia, Chronic Fatigue Syndrome, Mast Cell Disease, etc).