How To Interact and talk to someone with chronic illness

How to interact and talk to someone who has a chronic illness.  
These are some tips from other chronic illness bloggers and myself.  
It’s hard! And messy. But I have a few tips for you today:

• Be present. “Out of sight, out of mind” is too often a reality when health 
  challenges change your lifestyle. When suffering is long, suffering gets so 
  lonely and one of the most powerful things you can do for a chronic illness 
  warrior is let them know they aren’t alone. Let them have personalized 
  encouragement as they battle impossible things daily. 

ministry of presence without the expectation of a change in circumstances. 
Be there for the person without expecting their illness to change. 

I want to mention something here that many people may not think of or understand. 
Unsolicited (not asked for and not wanted-given or done voluntarily) prayers for healing. 
This is a huge problem in the chronic illness world. 

• • 1. It can add Shame, guilt, and discouragement to an already difficult situation.
    2. It can also be a form of manipulation. A way of trying to force our situation to change or make us do something that we don't want to or don't enjoy doing. 

Before you voluntarily pray for someone with a chronic illness, ask them if they're okay with that. If they say no, it's not because they don't have faith that they can be healed, no, it's simply because they've been in this place many times before and are now at the point where they've come to terms or come to grips with the fact that their situation is probably not going to change.  They have just accepted their situation. You have to have realistic expectations. It's the only way to survive. 
They need you to accept them and their disability and or chronic illness. 

Years ago mom had an adopted by heart mother, Linda West, who us kids affectionately called Nana Linda. She was basically a second grandmother to us kids. 
Nana Linda would often pray for healing for me. I didn’t understand what was going on with me at the time, but I knew that I never wanted to be around Nana Linda when I was sick. I always felt like I was letting her down. Looking back I realize that her unsolicited prayers left me feeling ashamed, guilty, frustrated, and discouraged. 

I was ashamed that I was still sick despite her prayers. 
I felt guilty because I wondered if there was something that I wasn’t doing that I could be doing that would fix my illness. 

The unsolicited prayers for healing can also be an underhanded way of telling the person that you're not willing to come into their world but you expect them to come into yours. 
It just further isolates them. 

Let me give you an example. 
We have a new friend out here in SC and she was talking to Mom on the phone the other day and at the end of the phone call she prayed for our family. For most people this would be nothing. It's the way that she prayed for healing for me that was so upsetting for me. She prayed that I would be healed so that I could paint or cook with her.
This was frustrating for me because of my sensory issues. I hate the smell of paints, it makes me sick and I hate cooking. There are too many triggers that come with cooking for me. 
She loves to paint and cook. I avoid those things because of the triggers that come with it.

Praying for healing for someone so they can do something with you, is basically telling them that you're not willing to enter into their world and do something that they're able to do or enjoy doing. 

Find out what the person with chronic illness enjoys doing. I guarantee you they have interests and hobbies.

• Avoid toxic positivity.
  Don't tell someone with chronic illness that things will get better.
  You have no way of knowing that. By telling them things will get better you are only giving them false hope and false expectations.

 *"Chronic" is a difficult word to accept. It requires determination and courage. 
Tears are a necessary way to work through the loss, grief, and trauma of chronic
 illness. If we break down into tears, please don't fuss at us. 
Sometimes it's the only way we know how to cope. Please just sit with us. 
We're frustrated and we don't know what to do.

• • •  Listen. Truly listen. Without offering miracle cures,
      without trying to explain things.
      Listen to understand and understand that you can’t 100% understand.
      Ask thoughtful questions.

Instead of asking someone the general "how are you?" question, 
break that one question into 3 questions by asking: 
"how are you doing physically? 
How are you doing mentally and emotionally? 
How are you doing spiritually?" 
This can help the person with chronic illness to know how to answer you better. 

"Have you tried… ..?" 
This is an uncomfortable question for many people with chronic illness. 
If a treatment, medication, or supplement exists, 
we've probably tried it or talked to our doctor about it. 
Although there can be things that we haven't tried yet. 
Some people just get so exhausted and get tired of trying things that they 
basically give up. 

Instead of asking someone if they've tried something, 
ask them if they mind if you ask them if they've tried something. 
This is a nice way of being respectful of where they are mentally and 
emotionally with their illness. Some people may not have the mental clarity 
to deal with certain questions. Most people with chronic illness often deal
 with brain fog. 

• • • Be creative and intentional. Each warrior will have different limitations
       and needs, but some basic problem solving and flexibility can be huge.
       Movie night instead of shopping. Exploring new food groups to fit dietary
       restrictions. Willingness to adjust your plans.

Some days are a struggle. It might be pain, exhaustion, saying "no" to another 
invitation, losing a friend to Illness or because they don't understand our illness, 
feeling trapped financially, or too many appointments in a row.  
We never know how we'll feel from day to day or even hour to hour.  
We have to set boundaries regarding our health, use of our things, 
personal space, thoughts and opinions, emotions, and spiritual beliefs. 
It's reasonable to protect ourselves in this way. 
Especially when we have multiple chemical sensitivies.  
We know our limits. We know what our body can and can't handle each day. 

We would love to be spontaneous and "live a little," but we have to pay 
attention to what we eat, how much we drink, (The majority of us with chronic 
illness often have GI issues so we may need to stay near a bathroom) 
what we did yesterday, or will need to do tomorrow. The list seems endless.  
A lot of us with chronic illness have chemical sensitivies.
 This puts a whole nother layer of caution on our lives. 
 This often means avoiding certain stores, avoiding certain isles in stores, 
staying away from perfumes, cleaners, detergents, non-organic body care products, etc.
 Avoiding smoke, wood smoke and cigarette smoke. 
Avoiding the coffee isles in stores. 
Chemical sensitivies makes going places difficult. 

We want to be invited even if we're unable to go. 
This lets us know that we're still thought of and cared about.
 Please be understanding when we have to say "no" to things because of our 
chronic illness. 

• • • When you invite someone with chronic illness to do something with you, 
      make sure you let them know that there is absolutely no pressure.  
      Let them know that it's totally fine if they have to say no.  
      Let them know that they won't hurt your feelings by saying no. 
      Give them a guilt free out option. 
      People with chronic illness often deal with a lot of guilt, 
      especially when we have to say "no" to things.  
      We tend to be major people pleasers.  
      We feel like we're letting other down when we have to say "no" to things.  
      We are scared to death of others getting upset at us for saying "no" and letting 
      them down.  
      We are afraid that people will think that we don’t care, because we do.  
      We are afraid that people will think that we're just being picky, we’re not. 
       We wish we could do anything we wanted and be spontaneous but we can't. 
       We have serious health issues to look out for. 
       We have sensitive bodies that we have to take care of. 
      We hate saying “no” but we have no choice if we want to remain as stable as possible. 

    • 1st person not 2nd.  Don't let them be an afterthought 
      and don't leave them out of the equation. 

Before we can feel safe, we need to know that we are understood. 
One way that others can help us to feel understood is by verbalizing understanding 
to us and not just to our parents, caregivers, etc. 
 Sometimes we may have a parent or caregiver reach out for us and decline 
something because we are too scared of the response we might get to do it 
ourselves.  
Example: if we have to say "no" to an important family event. 
if you only verbalize understanding just to the parent or caregiver, 
the chronically ill person doesn't exactly know that you really understand and you
 aren't upset at them for saying no. 
Verbalize understanding to the chronically ill person also. 
 If someone has to say no to something out of fear of unknown triggers,
 let them know that you understand their fears and that you aren’t upset with 
them for avoiding something. 
 The only way we know we are understood is if we are spoken to directly. 
 By talking directly to us and letting us know that you understand our situation, 
predicament, etc you help us feel safe. This is how we learn who is safe and trustworthy. 

• • • Be aware of chemical sensitivies. 
      When hanging out with someone with chemical sensitivies here are some ways
       to help keep them from getting triggered. 
      Wash clothes with apple cider vinegar and baking soda OR a non scented organic 
      detergent. 
      Wash hair with organic non scented shampoo and use essential oils if you like. 
      But please don't use oils with an earthy, woody, or floral scent. 
      Please only use citrus essential oils. 
      Please don't use cosmetics, hair styling products, body sprays, perfume, etc.
       Organic coconut oil with essential oils can be used for body cream.
      Please don't use essential oils that have a earthy, woody, or floral scent. 
      Use citrus essential oils instead. 
      Please don't have coffee around us. 
      If you smoke, we can't be around you. 
      
      If you want to invite us to go somewhere with you, 
      we would appreciate having all the information and name of place several 
      days to a week ahead of time so we can check for all triggers and know if 
      it's safe for us or not. We need time to check it out and plan ahead. 
      Please don't be offended if we ask a lot of questions.
      We are not trying to upset you.
      We don't fault you for anything.
      We are just tying to check out the surroundings ahead of time so we know 
      what our options are and how to keep ourselves safe.
      We are just trying our best to make sure that we will be safe and not get
       triggered.
      We don't want to go into a flare up.
      We will do almost anything to avoid a flare up.
      Because of our chemical sensitivies, we can't just go somewhere on a whim. 
      
      College comes with so many questions! 
      Can we manage a full time course load? 
      Can we live on campus? 
      Should we commute? 
      What about food and medications? 
      How will our bodies cope with less sleep and more stress? 
      How do we manage appointments and treatments? 
      What about hospitalizations? 
      
      How will illness affect our ability to work? 
      Live on our own? 
      Afford insurance? 
      Manage healthcare? 
      
      Because of our chemical sensitivies, school and work environments are an 
      absolute no! 
      Don't ask someone with chronic illness about work or school.
       Instead ask them if they have hobbies. I guarantee you they do and they
       are usually very passionate about it. Talk to them about their hobbies. 
      
      All growing up and well into my 20s I was grilled relentlessly about whether I
       was in school or had a job. This was one of the most frustrating things for me. 
      I was homeschooled and people didn't like that answer.
       People didn't understand that with my chronic illness getting a job is near
       impossible. 
      
      Because of the nature of our chronic illness, more often than not, the majority 
      of us, even though we are adults, we still live with our parents. 
      Most of us can't afford to live on our own. 
      Our bodies also don't cope well with stress. It can trigger us pretty quickly. 
      Though our minds can cope with the stress, our nervous systems can't handle it. 
      
      Here are some simple ways to come along side someone with chronic illness 
      when they are stressed or overwhelmed. 
      
       Sometimes putting on our favorite music can help calm us down. 
      Putting on a favorite movie or TV show can help distract and calm our nervous systems. 
      If there is a spinny chair available spinning on a chair can help calm our nervous systems. 
      Somatic experiencing can be helpful. 
      If we are able to go outside, taking us for a nature walk and using somatic experiencing 
      at the same time can help calm our nervous systems. 
      If they like to play games, play a board or card game with them. 
      Remind us of our hobbies. Let us teach you or show you some of our hobbies. 
      
      We have hopes and dreams for our future even if we don't talk about them.
       It feels risky to put them into words in a life with so many unknowns. 
      Can I get an AMEN??!! 
      
      Sometimes we're quiet, not because we don't want to talk,
       but because we don't have the words to describe how we're feeling. 
      It can be extremely difficult to put our feelings into words when we have 
      such complex illnesses. 
      
      People with chronic illness are often isolated and not able to get out much
       and have limits on where they can go and what they can do. 
      One of the most meaningful things you can do to encourage a person with 
      chronic illness is just call them on the phone or video chat with them.
       Send them a letter in the mail. Something they can physically touch can 
      mean so much. 
       It's super simple and doesn't cost much but it's so meaningful. 
      
      

• • • Be Loyal- Stay in touch 

  This goes back to the ‘out of sight out of mind’ idea from the beginning of this post. 
  “Out of sight out of mind” is too often a reality for those of us with chronic illness. 
  Healthy people have jobs and families to care for and our friends often don't have time for us and they drop the friendship. Those of us with chronic illness often feel forgotten about because we aren't able to have the active life that healthy people have. We aren't able to have a social life. 
  We don't have many friends. We get lonely. 
  We tend to live very isolated lives. 
  If you have a friend with a chronic illness, please don't drop the relationship. Make a conscious effort to reach out to that person. Be there for them. Sometimes the littlest things can mean so much. A weekly video chat and or phone call can mean the world. Often times virtual community is the only community we will ever be able to have. 

   * Spend time with chronically ill people

  If you are a friend of a chronically ill person get to know their needs, fears, loves, etc. It can be uncomfortable at first but it will mean so much to them. 

• Don’t let the friendship become one sided
• “Don’t just call me when you need me, 
  call me sometimes to see if I need you.” 
  This is something that happens all too often with friendships, 
  whether one person has chronic illness or not. 
  We all know the saying that friendships come and go.
   This happens for a number of different reasons. 
  People on the spectrum or with chronic illness tend to be very loyal. 
  We get very invested in our friends lives. 
  We get very frustrated when others don’t do the same for us. 
  Those of us who are different tend to take things personally. 
  When a friendship is strong for a long time and then the so called normal person gets married and has kids the friendship often breaks because they don’t keep up the relationship on their end. 
  This has happened to me many times. It’s very hurtful.
  The person who is different often finds themselves always reaching out and initiating conversation but the other person doesn’t reach out or initiate conversation back.  
   The person who is different often wonders if the other person stopped talking to them because they don’t understand that person or their chronic illness. 
  I have a very close friend that had kids that HAS STAYED  a loyal friend to me.
   Getting married and having kids is not an excuse to break the friendship. 
  Those of us who are different don’t have many friends because we are often so misunderstood. 
  We treasure what friends we do have and when we lose friends it’s very painful and feels very personal. 
  With technology now days it’s super easy to leave a text, voice message, or a video message for a friend. 
  It only takes a few minutes and it will mean so much to the person who is different or has a chronic illness. 
  We are often isolated and aren’t able to get out much so it means a lot when people take the time to reach out.

 

• Main points borrowed from:
  Jennifer Ji Hi Ko,
  Sarah Grace Willoughby - He's Making Diamonds and the diamonds conference. 
  Chronic-Joy.org free resources 
  Joni and Friends ministry podcast.
  I also added in my own two cents and experience living with chronic illness. 
  
  
  
  
  
  
  

  Spend time with chronically ill people.