By Stefani Shea
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 there is a lot we can still say to each other and our communication can be positive. Of course, there is much more 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 illnesses, 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, reliance on mobility aids, etc. But often, there is no visible trace of debilitating diseases. You can’t “see” a broken autonomic nervous system, an inflamed colon from inflammatory bowel disease (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; patients may “look normal,” but they live a life that is anything but normal. Because of this, hearing “it’s all in your head” is almost a universal experience for dysautonomia patients in particular, and it’s difficult to undo the damage of these words.
If a loved one tells you about their condition, their symptoms and their limitations, they’re showing an incredible amount of trust in you. It may be easy to interpret anyone’s response to their condition as “laziness,” but they’re fighting a battle that requires tremendous effort. Recognize the incredible amount of strength it is taking for them to deal with their challenges.
Saying these words to your loved one or friend is a beautiful gift they will be eternally grateful for.
2. “I want to understand.”
In the health communities I’m in, I often see people discuss the lack of support they receive from loved ones because they don’t 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 is truly 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 will also give you some idea of how they plan their lives. 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 (and many have actually), 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 challenges. 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.
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’s sometimes necessary. If you take the initiative to ask your loved one how you can help them, then they don’t have to go through that difficult process of getting the strength to ask for it.
4. “Can I visit, call, email or 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.
Having an illness can be isolating - devastatingly so. This was something I’ve learned to live with, but I wasn’t at all prepared for it at the beginning. I’ve been lucky my friends and family have been understanding as I have become home-bound over the last year.
Please know 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 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.”
This is 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).
One of my good friends has Crohn’s disease, and we usually chat online or text throughout the day even though she lives not far from me. We try to lift each other’s spirits each day with our affinity for the absurd. Sometimes my friends come by and we play games. 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 still wants to live the fullest life possible. They may not be able to do the things they used 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 can’t 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 face challenges. It can be a frustrating, disheartening and aggravating process for them, too. I think it’s OK to share your own concerns with adapting to your loved one’s illness because it shows you’re on their side. I’ve seen this particular problem lead to serious stress or even dissolution of relationships. It can be hard to accept your loved one has serious limitations and needs help.
Being a caregiver is a tough gig. I’ve watched my husband do it, and I’ve seen my dad be a caregiver to my mother. I’ve realized they may 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 and brings me medicine and fluids when I can’t leave my bed. He also 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 a caretaker wants to talk discuss their issues as long as it comes from a place of compassion.
8. “I support you, care about you and love you unconditionally.”
This may be a no-brainer. We all need to know we are loved and valued, but when you’re dealing with chronic illness, this is especially true. I often feel guilt and frustration about my limitations and the efforts of others to help me get through life. Hearing these words can be a reminder to your loved one that despite the challenges, you still love them and care about them unconditionally.
9. “We got this.”
I have learned managing and living with an illness requires a team effort. It’s a collective enterprise, requiring the work of your loved ones, friends and doctors. I think many people may be living a fantasy and think they’re independent. Before I got ill, I did. 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.
Reprinted with permission from The Mighty