I've always wanted someone to look in my eyes and tell me I'm fascinating.
I just didn't think it would be my Rheumatologist.
-:- Debbie Edward -:-
There is no good card for that
When you find that someone you care about has a chronic illness what do you do? The more you find out, the more you realize "there is no good card for that". We usually only understand what we are familiar with. Being chronically ill is very different than being sick. This blog is called "But You Don't Look Sick" but what does sick look like? We understand runny noses, watery eyes, flushed faces etc. So when that isn't apparent it is hard to understand why someone that is trying so hard to look normal is fighting an exhausting war inside.
With autoimmune diseases we have our body taking on our own body in a major war. Then to top it off, we add in heavy duty drugs to get our immune system to slow down the attack. Three major battles going on when we are at rest. We have battle fatigue. In addition we are trying our level best to be a functional human being. I write this post because I see the hurt that my RP friends feel because of misunderstandings.
-:-
No life is all sunshine but two people can share one umbrella and survive the storm together. I love getting by with a little help from my friends.
-:-
4 Agreements
My son once told me about a book he liked called The Four Agreements. I really liked the four main ideas. This is used in business, but it can be used in our daily communication.
- Be impeccable with your word.
- Don't take anything personally.
- Don't make assumptions.
- Always do your best.
What does this have to do with talking with your chronically ill friend?
When you say you will give them a call, be impeccable with your word, follow through, or they will feel they aren't important to you.
If you have made plans with them and they cancel, don't make assumptions, and think they've all of a sudden become flaky. They want to go and do things even more than you do but their body is not cooperating. Remember your friend even after repeated cancellations. Keep
inviting them. They want to live a normal life so badly, and every once
in a while they get lucky and feel good on a day that they could
actually participate in something.
If they haven't contacted you for a week or more, don't take anything personally, probably no one has heard from them. They are just trying to cope with a rough week.
Always do your best to validate their situation. "I'm so sorry, how awful" or "I'm there for you" are simple very validating statements. Any type of disingenuous or forced cheerfulness
is only going to make the sufferer
feel even more defeated.
Exactly what do you say to your friend? We want to cheer them up, relate, give wisdom, understand, comfort anything to ease their burden. People who have strong social support networks tend to do better long-term than those without.
Talk WITH them, not TO them.
How you talk with them depends on a few things:
- How long have they been ill before they were diagnosed?
- Autoimmune diseases are so elusive. It can sometimes take years to find the reason behind an indivisible disease. Your friend could have spent this time not only not knowing what is wrong them but feeling like friends aren’t taking them seriously, even thinking the one ailing has developed a case of hypochondria.
- Your friend could still be hurting for being misunderstood for a long time, hesitant to confide. Be understanding and patient.
- Their diagnosis is new.
- If the diagnosis is new, your friend could be in shock and is trying to process how drastically their life is about to change.
- With a new diagnosis, they may not have decided who they are going to share this news with or if they will share it at all.
- Your friend is comfortable with people knowing about their disease.
- If they have known about the chronic illness for a while, they have made as much peace with it as they can and are willing to discuss things.
- If you heard about your friend's disease through the grapevine, let your friend take the lead on letting you know about it.
- Remember it is your friend's story to tell.
- When someone is dealing with a chronic illness the feeling of being in control is taken from them. The only thing they can really feel in control of is how information about them is given.
- “It’s really important that the person with the disease sort of owns that information,” Deborah Miller, Ph. D says. “Who they choose to disclose it to is sometimes the only sense of control that they have during that time.”
“Gossip needn’t be false to be evil –
there’s a lot of truth that shouldn’t be passed around.”
-:- Frank A. Clark -:-
there’s a lot of truth that shouldn’t be passed around.”
-:- Frank A. Clark -:-
"I hear you've been sick, how are you?" Just a simple passing question but how does one answer it? Do I let it all out? ..... 'I have an incurable disease and I'm lucky to be alive!!' That's a little (way) over the top so unless I am having a heart to heart with someone I have a couple little responses. There is a time, place and manner for everything.
When people ask me in passing how I'm doing, I have a few responses.
I’m just Peachy
- That means still hanging on the tree
- Rosy & sweet
- Barely hanging on
- Overly ripened
- On the ground, squished
- Squished & the bugs have found me (code for not a good day)
Or
- Better than spiraling down hill with no brakes
- Things are on a simmer
It's more than OK to tell someone with a chronic invisible disease that they
look good. Who doesn't like to hear that? When someone is telling you they don’t feel well don't say, “But you look
so great!”. It’s
invalidating. Saying “But you look healthy!” is even worse.
I asked my friends on our Facebook Relapsing Polychondritis Support page what they would like people to know about when communicating with them and these great, frank responses are what I received.
Messages from my Facebook community would like people to know:
- Honestly, I just want people to ask how I'm doing, and then not act uncomfortable when I give them an honest answer. Most often people say something sympathetic and quickly change the topic, which feels like I've made them uncomfortable. A simple follow-up question based on my answer (about how I'm feeling) would feel less like they wish I had kept my health to myself.
- I don't feel as though I need to discuss the matter with everyone in my life. What I want is to not be dismissed or my issues be minimized when the other person thinks it's not a big deal. Recently I had a so called friend say to me: it's just anemia but for me it's small fiber neuropathy and neurological since long term damage has occurred. She didn't know that but to say it's just anemia is stupid.
- I would like people to understand that I am not able to do things as they can. I get so annoyed when friends say to get out more, you will feel better. Also, get out in the sunshine. The sun is bad for me. I have to do things at my own pace. Don't ask me to do huge favors, and then get upset with me if on the day I can't help because of RP flares. Understand that some days are better than others. Also a busy day can burn me out for a week after.
- To accept me "as is"
- To remember that even though we often cannot go out and do fun things, or meet up, or we have to change plans at the last minute, that is never because we don’t want too, it hurts so much not being able to go, but we still need to feel we are wanted there, keep inviting us, keep asking, keep patience when we suddenly can’t go at the last moments. I have lost so many friends, folk stop inviting me, as I let them down, or say I can’t. It hurts not to be included even though I know mostly I can’t go. And to remember that saying we look well without much info, seems a kind thing to say, but it can make us feel that our battles are belittled, we know it is not intentional, but many of us are unlikely to turn and say, actually we feel dreadful, we just smile sheepishly and say thank you then feel we can’t share our recent struggles.
- I'd like them to know that when I say I don't feel good, I really don't feel good at all. When I stop answering my phone and texts for weeks at a time it's not you, it's my disease so please don't get mad and disappear. I need people to stop disappearing on me; this is such a lonely time for me.
- When you are with me, please don't be a jerk. Don't be condescending or "psssht sure you feel THAT bad" with me as I'll disappear quick. I cannot handle extra stress! It flares me!
Things to do:
Invite us to things just like you would have done in the past.- When we cancel repeatedly or leave early from things, it is our new normal. We need you to understand it so it can be your new normal concerning us too. It really has nothing to do with how we feel about you and everything to do with our disease. It might be hard for you to handle so try to learn what we have had to learn about using our spoons. How to spend my spoons.
Be happy for us when we actually do get out.
- If we cancel one day on you then the next day we actually get out to enjoy ourselves, be happy for us. We didn't all of a sudden get better, we are just getting a much appreciated break. We are grabbing every opportunity to get some of the old normalcy in our lives. Even if we get out for a while, we are probably pushing to do even the most rudimentary things.
Give us a call or stop by for a visit, but don't make it too long.
- After we go to an event, we pay for it for days or weeks after while we recharge. Even long phone calls can take a toll on us. Visits are awesome, but long visits can be so draining on our limited energy. See what I mean at How to spend my spoons.
Take some time to understand the illness.
- The fact you are reading this blog is awesome! It shows you really care and want the best for us. If you don't want to read the complete blog there are a few blog posts that I would suggest to help explain Relapsing Polychondritis. About what it affects in our body see What is Being Spotlighted Today - Symptoms. Our energy levels and how we disburse our energy
How to spend my spoons. What helps us cope Be Kind To Yourself. For more indepth on the disease, What Holds Me Up Is Breaking Down, What I've Learned So Far, Just Breathe.
- Thank you for listening to us talk about how we feel. We don't want to seem to be complaining, that is why RP warriors aren’t vocal about their struggles. Many just stay quiet and withdraw. Please create a safe place to express the way we feel as this disease is part of our every minute of everyday. Some times we just need to vent. Just give us a hug and let us know you will always be there.
Before you speak always consider the impact your words will have. So much unnecessary pain is caused by words spoken in haste.
Things that are hard for us to hear.
While we understand that people only trying to relate to us and establish a common connection, it feels a bit disheartening when we hear things like:"You're tired? I get tired too. I have days that I could sleep for hours when I get home from work."
"Just go lie down, you'll feel better after a good nap,"
"Don't you sleep well at night?
"Don't you sleep well at night?
"Maybe you just need a vacation."
"How much exercising are you getting?"
Fatigue is different than being tired. Exhaustion is harder for people to empathize with rather than pain. Everyone experiences pain but this all encompassing exhaustion is hard to relate to for most of our friends.
-:-
"If you were mentally stronger you wouldn't get sick."
"Why aren't you getting better?"
Our lives are different from yours. We will have the disease the rest of our lives, there is no cure. We would like nothing more to be our old selves. We just don't have the stamina. Please don't have the same level of expectations from us as you would a healthy person.
-:-
"You need to stop taking those chemo therapeutic drugs, they'll kill you!"
"CBD oil fixes everything"
"Did you give up sugar or night shades?
"What diets have you tried?
"What herbal remedies have you tried?
"Have you tried essential oils for your fevers?
"Could it be an allergy?"
"I have a book you should read."
To assume that we have not done everything possible to help our situations is unfortunate. To suppose that we haven't taken every vitamin, medicine, treatment etc. to improve ourselves sounds like we don't care about getting better. If there was a better way, we would have found it by now. What may work for semi-healthy people doesn't work for those of us with a crazy killer autoimmune disease that is trying to take out organs.
"Why do you still have hair?"
"Well at least you don't have cancer!"
"Oh, it's just an autoimmune disease, I thought it was something serious."
"I've never heard of that disease before, is your doctor sure?"
"Should you get a different doctor?"
"Did you get this disease because you have some unresolved anger from something that happened in your past?
This disease is relentless. It can start out simmering then after it reaches a level, it never lets up. Check out What is Being Spotlighted Today - Symptoms Something is always going on. It seems as if we are constantly putting out fires as we repair another part of our body as it gets affected.
Once I read a post on our RP Facebook page where a very despondent gal mentioned that she wished she had cancer rather than RP. She went on to say, "with cancer you can cut it out and treat it with the same type of drugs we are already on, then you could go into remission. That can't happen with us. To cut out our disease is impossible because it is us". To equate this with cancer doesn't work. No one wants either one. But cancer does get more respect than our disease does, it is only because of the lack of education.
Once I read a post on our RP Facebook page where a very despondent gal mentioned that she wished she had cancer rather than RP. She went on to say, "with cancer you can cut it out and treat it with the same type of drugs we are already on, then you could go into remission. That can't happen with us. To cut out our disease is impossible because it is us". To equate this with cancer doesn't work. No one wants either one. But cancer does get more respect than our disease does, it is only because of the lack of education.
After we try to explain our rare disease we still get responses that show that we may not be communicating well. Empty clichés about “getting better” can make a person feel crushed and completely misunderstood.
In summary..... We just want people to know that they should always be kind to everyone and empathetic with their limitations. Don’t lose hope with your friend that
seems tired all the time, changes or cancels plans. Don't assume that they won't feel well and neglect to invite them to things, keep the invitations coming. There are still good days when there is more energy and less
pain. Just try to understand and include them. It breaks their heart when they are excluded. Mostly, always be kind.
