chronic illness · chronic pain · crps · lyme · writings

what to do (and not do) when you have a chronically ill loved one

Before I developed CRPS and the Lyme, I had very little experience with any kind of health issues. I had never broken a bone or had a surgery besides ear tubes at age 6. I got sick maybe once a year and had no real experience with chronic pain minus some running injuries I accrued from poor running form. In short any issue I had with my physical body was fairly easy to solve. Take a pill or do PT or just rest and ice.

For 28 years I lived in a pretty normal functioning and healthy body. 


changes

Then it wasn’t very normal, functioning or healthy.

Since my health has drastically changed I have become acutely aware of what people say to me and how it sometimes makes me feel. Some days I can shrug stuff off and other days I can’t.

I try to always keep things in perspective that a few years ago I didn’t comprehend what chronic illness and pain were like. I knew people with chronic illnesses and had no idea the gravity of them or how drastically life had changed for them. So many friends say to me “I can’t imagine what you’re going through” and yeah you just can’t. I don’t even know how to explain what my body feels like during really awful days and I know that its hard for others to wrap their head around.

That’s ok. 

Other people go through things I don’t get or haven’t experienced, thats life. All we can each do is try to be there for each other and be compassionate (on a side note to anyone who I haven’t been there for..Im so so sorry)

If you can, please read The Spoon Theory or read the graphic down below, its a great way to better understand what being chronically ill is like. It explains it better than almost anything else I have found.

No matter how upbeat and optimistic a friend who is suffering may seem, there’s simple things you can do as a loved one that can help your friend/family member to feel more supported, understood, and heard.

So here’s some stuff to think about if someone you love is sick and/or in pain.

1)  Just because you can’t see it, doesn’t mean it isn’t there.

A lot of chronic illnesses are “invisible” meaning when you look at someone you can’t always tell they are sick. Telling someone they don’t look sick can be incredibly hurtful as it essentially negates what this person feels like INSIDE their body. Many of us with chronic pain try REALLY hard to lead as functional a life as we can.

So if you see me out grocery shopping, you may think “She looks great she must be doing so much better”.

In reality what you don’t know or see is that I had to wait several hours after I woke up for my pain to calm down just enough so I could simply get to the store and as soon as I am done here I will be racing home to lay down all while praying my pain doesn’t flare up because I left the house. Essentially if the crazy awful pain I have inside of me radiated out, I would really look like this:

 

combined with this

and mixed with this

and a dash of  Britney circa 2008

If you know someone is chronically ill, please tell them how happy you are to see that they are out and about or tell them they look great in spite of badly they may feel but please do not say that they don’t look sick.

Not all illnesses show on the outside.

2) Don’t ask why

One of the hardest questions I have found myself having to navigate is when people ask why. “Why aren’t you cured yet?” “Why aren’t your drs doing more?” “Why are you getting worse?” The fact of the matter is this: A LOT of illness don’t have cures. Some are incurable but have the ability to go into remission and some don’t even go into remission. That is just the facts plain and simple. It sucks and is really awful to think about but that’s just how it is.

To up the ante, some illnesses are progressive. Chronic illness isn’t linear, it loops and swerves and circles back and then it may hop and skips 3 steps ahead. So this means your friend may continue to get worse or they may start to feel well and then all of a sudden get a lot worse. Really sad but also something that happens with MANY illnesses.

This doesn’t mean their doctors aren’t doing everything in their power or that your friend hasn’t tried every treatment under the sun.

Lastly I will say this, chronic pain is incredibly difficult to treat.

It is a intricate balancing act of medications, rest, meditation, and machines. You do not just pop a pain pill and feel 100% better. Again I know its hard to comprehend when we as society think “Oh I have a headache, I’ll take a Tylenol and in 30 minutes I won’t have one”.

Chronic pain and illness is one of the most difficult things drs treat and thus your friend may have an uphill battle ahead of them.

3) Enough with the essential oils (and other suggestions)!

“Have you thought about cutting all foods that are red?” “What about doing essential oils? My friends neighbors dog’s best friend cured her Lyme with them” “Have you tried smoking weed to help your pain?” “Have you cut out all gluten even the gluten in your shampoo?”

The list goes on and on. I know people are trying to be helpful and certainly I don’t know everything. The issue is that when people suggest these things that are “outside the box”, chances are I have either already tried them or there’s no proof that it works, just anecdotal “evidence”. Believe you me I have spent countless hours online (ask my husband) looking up things to make me feel better because its the thing I want most in the world. However after 3.5 years of being ill, I no longer have the energy (or money) to keep trying treatments that aren’t covered by my insurance, don’t have a lot of scientific proof or are not okayed by my dr.

That being said some people do find relief with unconventional treatments and diets BUT it is not a one size fits all situation. Your friend who cut out all nightshades might be feeling a lot better but she may not have the same health issues as me. Even people who have the same illness may not respond well to the same diet change or a new essential oil protocol.

To give one example, many people have suggested me changing my diet over the past few years.

I recently found out I have gastroparesis which means most of those diet suggestions (go raw vegan! go paleo! go gluten-free!) go against what my gut can handle. Bodies are complex and unless you are a dr, you just don’t know how something could affect someone else who is ill.

It is best to assume that your chronically ill friend has tried a number of things after extensive research, much more than you probably realize. If they haven’t tried it, there’s probably a reason they haven’t.

4) Just cause I can’t go out doesn’t mean you can’t come in

Before I got sick I loved going out with my friends. We went to the gym together, ran races together, took turns cooking at each other’s houses, went to the movies and bad rap concerts as well as a number of awesome fun things. As my health got worse and worse I stopped being able to go out as much because I felt crappy enough that I didn’t feel like I could “fake”my way through or  was in too pain to even leave my bed .

Those of us who deal with chronic pain and illness often don’t want to spend the entire time out with our friends hijacking the conversation to talk about how awful we feel or being unable to enjoy the experience because the pain doesn’t allow us to be present. Its embarrassing and frustrating.

So you become that friend that has to cancel plans last minute which is really terrible feeling. I cannot even explain the dread that comes with having to text a friend I have already canceled on at least twice and say “Hey Im sorry but Im having a bad flare up and I can’t hang out today”. I always picture people seeing my text and this happening:

It’s awful to watch your social life slip away.

It sucks to no longer be invited to parties because people assume you won’t come. It’s hard to see pictures of everyone having a blast on Facebook when you haven’t left your bedroom in 3 days except to crawl to go to the bathroom. It’s really lonely to lay in bed or on the couch all day by myself with little to no social interaction.

So if your friend can’t go out, offer to come and spend time with them wherever they are the most comfortable. It may not be as awesome as going to a concert but it will be just as fun and mean a great deal to your friend.

Theres sometimes nothing more touching than a friend who lays in bed with you and make you laugh when you are feeling super freakin’ awful.

5)  Sometimes I’m sad and that’s ok

Its hard to see someone we love hurting. Our minds often begin to work to think of some way to make that person feel better. But sometimes no words can make us feel better, at least not at that particular moment in time. Sometimes someone just need to vent and mourn without any solutions. Sometimes there are no solutions.

For the last 4 and half months I have been unable to work because I am unable to walk or drive. As things progress I realize that I may have to close my beloved business and that is pretty sad for me. I have talked to some people about it and of course people want to help comfort me by saying “You can open it again”.

This is absolutely true but right now as I am digesting this loss along with several other losses, I don’t always want to hear about the future because Im not done mourning the present.

Let your friend be sad if that’s what they need. They won’t always be sad, they just are processing things they have lost. Chances are you lending an ear means a great deal.

6) You may not understand but that doesn’t mean you can’t listen

I had a friend tell me she “just didn’t understand” what I was going through last year when I was very sick and unable to leave my bedroom/walk. It was hard to hear that and while I understood that my life is difficult to comprehend, it hurt that she could not still figure out how to offer me any support. Instead she ended up distancing herself from me and to be honest, it was pretty hurtful and it changed our friendship.

I lay in bed for months with no human contact except for my husband, my home nurse, and my dr. We ALL go through things in life that another friend may never experience. I have never been divorced but I have friends who have been through that and I try to always listen and show support.

I do my best to be there for my loved ones even if I have NO life experience with that issue, its all we can do as humans loving one another.

It can be scary to see a friend really sick and it can be hard to comprehend what their day to day life is like…dont let those feelings keep you from being around your friend.

ok that seems excessive.

They need you and they will appreciate ANY support you can give them.

this may also be excessive.

7) Your life (and problems) still matter

As my illnesses have gotten worse over the years I have had friends hold back from telling me about issues they are struggling with OR preface things by saying “You have it so much worse, I shouldn’t be talking to you about my problems” or “I don’t want to bother you when you are going through something way worse”

One person’s suffering doesn’t negate another persons. There’s no champion belt for suffering, no queen of crappy luck.

I LOVE being able to listen to my friends and I also LOVE being able to help problem solve if that is needed. A lot of stuff in my life isn’t normal anymore, being able to be a good friend feels good and normal to me.

Chances are your friend/loved one also enjoys being a good friend and WANTS to hear whats going on with you. Your life matters too, even if your friend is in the hospital or a wheelchair. Your friend/loved one may not be able to do certain things anymore but they can still love and support you!

So those are just a few tips from me to you about how to help and support your loved one.

I do want to preface that these may not all ring true with your loved one.

When I first wrote this, I had a friend who is chronically ill comment that some of what I wrote was not true with her experience. She liked when people told her she didn’t look sick and when they made suggestions on what might help. The way she feels may be how your friend feels. We all are really different in our illnesses and how we deal with them.

These are just suggestions from me, not rules 😉

You could send this blog to your loved one and ask them which ones resonate with them. It may start off a great conversation about their needs, your needs, and how you can grow even closer in supporting one another.

A dear friend always tell me to be “Gentle with yourself” and that stays with me constantly. Small things that you do mean a lot to anyone who is struggling, no matter what that struggle is.

For those who are chronically ill, what do you wish people did differently?

xo,

 

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**all gifs made by www.realitytvgifs.tumblr.com and www.giphy.com

4 thoughts on “what to do (and not do) when you have a chronically ill loved one

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