I’ve read many lists describing “what not to say to
someone with chronic illness,” so I wanted to offer a new spin. These lists are
valuable for the chronically ill and the healthy, but the lines of
communication between us can be fraught with misunderstanding. It’s important to
recognize that there is a lot we can still say to each other, and these
communications can be positive. This is an extension of an earlier post about how to help a loved one who has chronic illness. Of course there is much more that you can say to someone with a chronic illness, but this is a good place to start.
1. “I
believe you”
This one is especially potent. For
many of us who have invisible conditions, we hear “it’s all in your head”
everywhere we turn. I think there’s a cultural assumption that physical illness
manifests in tangible, obvious signs: loss of hair, paralysis, loss of weight,
etc. But often, there is no visible trace of debilitating diseases. You can’t “see”
a broken autonomic nervous system, or an inflamed colon from IBD, or the ravages of kidney
disease. With conditions like Dysautonomia, the medical establishment even
struggles to identify and diagnose it because of its nebulous nature; the
patient may “look normal” but they live a life that is anything but normal.
If a loved one tells you about
their condition, their symptoms, and their limitations, they are showing an
incredible amount of trust in you. It may be easy to interpret anyone’s
response to their condition as “laziness,” but trust that they are fighting a
battle every moment that requires tremendous effort. Recognize the incredible
amount of strength it is taking for them to fight this battle.
Saying these words to your loved
one or friend is a beautiful gift they will be eternally grateful for.
2. “I
want to understand”
As an extension to #1, I often see
in the health communities I’m in people discuss the lack of support they
receive from friends, family, spouses, etc. because loved ones do not understand
the symptoms of the condition. Sometimes it’s difficult to wrap our brains
around all the ways illness can manifest. Why would someone who looks perfectly
healthy suddenly start fainting whenever they stand? How is that a thing? Yet,
it really is a thing with Dysautonomia. Fact truly is stranger than fiction in
the world of illness.
Often when you have a chronic illness,
people come out of the woodwork with unsolicited advice and sometimes sanctimonious
suggestions about how we should be managing our conditions. This is not the
place to start:
A simple Google search can go a
long way in understanding your loved one’s condition and symptoms. Understanding the Spoon Theory also will give you some idea of how they live and plan their life. Asking them
questions about their condition and treatment can also give you a lot of
information. Your loved one is probably so informed about their condition that
they can present a powerpoint at a medical conference on it, especially if
they have a rarely diagnosed condition. As with #1, if you say you want
to understand what they are experiencing, it shows that you value and
appreciate their struggle and efforts to manage their health.
3. “How
can I help?”
Learning about their condition may
also give some insight about how to help them with their battles. Your loved
one may need help with simple tasks, but more than likely your loved one will
need your understanding and empathy as they try to live a full life despite
illness.
Asking for help sucks. We are
conditioned early on to value our independence and brush off any appearance of
vulnerability. I have never ever been good at it, but I have learned that it is
sometimes necessary. If you take the initiative to ask your loved one how you
can help them or how to be available to help, then they do not have to go
through that difficult process of getting the strength up to ask for it.
4. “Can
I visit, call, email, text?”
Not everyone who is managing a
chronic illness is home-bound. Some of us are, and some of us manage to live
full lives. No matter the level of functionality, however, you have your good
days and bad days with chronic illness, and we’re in a constant battle with our
bodies to force them to comply. This can make staying in contact with family
and friends difficult, especially if driving or leaving the house is
challenging.
Illness is isolating, devastatingly
so. This was something I’ve learned to live with but I was not at all prepared
for it at the beginning. I’ve been lucky that my friends and family have been
understanding as I have become home-bound over the last year.
Know that your loved one would give
anything to be able to have a vibrant social life and be more active, so be patient as they navigate life on their own terms. If you
can reach out to your loved one, you can help get them over the bridge of the
isolation and bring some joy to their life.
5. “Here’s
a funny story”
As an extension of #4, if you can
say something to your loved one to brighten their day, that’s usually better
than handfuls of chocolate (most of the time at least).
My good friend Carrie Anne has
Crohn’s Disease and we usually chat online or text throughout the day, even
though she lives not far from me. We call ourselves Team Calamity and try to
lift each other’s spirits each day with our affinity for the absurd. When my
friends come by and we play games, we unleash the floodgates for trash talking
and your mom jokes. These are moments I can try to forget about being ill and
just enjoy life, and it’s pure bliss.
Your loved one may sometimes need
empathy or a shoulder to cry on, but a good laugh is more powerful than almost
anything else you can give them.
6. “Let’s
do something fun that’s within your limitations”
In relation to #4, your
loved one may have limitations but they still want to live the fullest life
possible. They may not be able to do the things they used to be able to do, but
they still want to do whatever they can. If someone puts pressure on me to do
something that used to be easy for me but is now difficult or impossible, I shut
down. I cannot participate if expectations are impossible for me to meet.
You can talk to your
loved one to work together to find alternatives so they can participate the best
they can and still have a great time.
7. “This
can be hard for me too”
It’s also hard for friends, family
members, or even acquaintances to watch someone suffer, often inexplicably. It’s
a frustrating, disheartening, and aggravating process for them too. I think
it’s ok to share your own struggles with adapting to your loved one’s illness
because it shows you are on their side and invested in their success. I’ve seen
this particular problem lead to serious stress or even dissolution of
relationships. It’s hard to accept that your loved one has serious limitations
and needs help.
Being a caregiver is a tough gig.
I’ve watched my husband do it and my dad be a caregiver to my mother, and I’ve
realized they have it harder than the one they are caring for. Significantly
harder. My husband is the sole breadwinner in our family and carts me to
appointments, pushes my wheelchair, brings me medicine/fluids/cats when I can’t
leave my bed, and has to pick up the slack on my ever-increasing list of things
I can no longer do. This is the case for many people who have spouses who are ill.
The acceptance train is a hard one
to catch, but we all have to board it someday, the sooner the better. I don’t
mind if anyone wants to say this and discuss their struggles as long as it
comes from a place of compassion.
8. “I
support you/ care about you/ love you unconditionally”
This may be a no-brainer. We all
need to know we are loved and valued but when you are dealing with chronic
illness, this is especially true. I often feel guilt and frustration about my
limitations and the efforts those around me have to make to help me get through
life. Hearing these words can be a reminder to your loved one that despite the
struggles you still love them and care about them unconditionally.
9. “We
got this”
I have learned that
managing and living with illness requires a team effort. It’s a collective
enterprise that requires the work of your loved one, family, friends, doctors.
Many people live a fantasy that they are independent and don’t rely on an interdependent
network of support to get through each day. Before I got ill, I did for sure. When
you are chronically ill, you can no longer live that fantasy. We have to carry each other.
We are stronger
together and we can face the challenges of life as a team.
We got this.
