Living With It

June 20, 2018

  When you live with a chronic illness, it is the center of your life even if you don't want it to be. All of your choices and plans have to take the illness into consideration. You know there are things that you just can't do. My husband loves music and concerts and we have never gone to a show together. It has been years since we have gone to a movie in theaters, we don't eat at places that are noisy or crowded and I don't often drive at night... and the list just grows from there. Physically, I cannot be constantly on the go or planning things last minute. Sometimes, people think that because I can't do as much I am lazy and that is very frustrating. Resting and taking care of myself so that I can care for my family takes precedence over anything else. 


    I live with this disease and, I think, manage it pretty well.... but there are times when I am angry, sad and just plain over it. The best thing you can do for anybody- chronically ill or not- is to let them feel their emotions. Let me be angry and upset. Let me take off my mask and be real. Most importantly, do not tell me "it could be worse"... "it could be cancer" ..."you aren't dying" .... trust me, I know those things better than anyone.  The fastest way to shut someone out and make sure they never come to you openly is by making what they are feeling seem to be less than. Having not walked down their path, you can't tell them that what they are feeling is not valid because "it could be worse." I don't presume to know anyone's story, even others that have chronic migraine, because we are all different and nobody experiences this in the same way. 



Things to NEVER say to a person living with chronic illness...And what to could say as an alternative...


1) It could be worse 

Can you feel my side-eye glare!? Trust me, I know life can get much worse but that doesn't mean I need to put on my happy shoes and tap-dance in the sunshine all the time. What I am going through is hard, and comparing me to someone else "worse-off" isn't helpful. 


*Instead say - "I'm sorry that you have to go through this." 

Saying something as simple as that can make all the difference. 


2) At least it's not _____  

This one... Nothing makes me want to snap more that this. When someone says this it is belittling my pain, and just shows how ignorant they are. I know that I could be suffering from something way more challenging or life threatening, but none-the-less I AM suffering. 


*Instead say - "I can't imagine what you are dealing with." 

Compassion goes a long way in any situation. 



3) So-and-so had that too and ____ cured them! You should try that. 

This is usually coming from someone that means well, so I just try to say thank you and move on.  However, most people have no idea what I have tried, what I am allowed to try or what my triggers are, so hearing this over and over can be wearing. 


*Instead say - "Do you mind sharing with me what kinds of treatments and things you have tried?"

It is nice to know that you are truly interred, and buy asking questions and having a real conversation the person will be more open to your input. 



4) But you don't look sick? 

Chronic illness is mostly invisible, and most of us with these illnesses get pretty good at hiding our pain. We don't want to be a burden and have the focus always be on "what's wrong with us" so we put on the mask. Some days I can force myself to be somewhat functional, but there are more days that I can't- and on those days you do not have a looking glass into my house to see me curled in a ball, wishing the day would just end so that maybe tomorrow there could be a chance of some relief. 


*Instead say - "You look great today, I hope you're feeling well too!" 

You are complementing (which is always nice) and acknowledging they still may be in pain despite their appearance. 


5) You just need to exercise more.

For me, exercise can be a trigger. I have to be very careful about how much physical activity I do and I can no longer do things I used to love like running. Yoga, stretching and walking (and playing with my kids) is all I can physically do. 


*Instead say - "I am going to the park for a walk, would you like to join me?" 

It is nice to be thought of and if they are up for it they will tell you, otherwise they will still really appreciate the offer. 


6) It's all in your head.

Yes, because that is where migraine attacks my body first- but it's not a fictional plea for attention. My pain is as real as a knife wound. 


*Instead say - "I have no idea what kind of pain you have to deal with." 

You don't have to have  a knowledge base of chronic pain to believe it is real, and it is okay to tell the person that you can't really relate. This can be a chance to open conversations that allows the person to explain a little of what they go though and you can be open to hearing them. 


7) Just lower your stress level and it will be fine.

Yes, stress can be a trigger and I do my best to keep stress low... But life will never give you zero stress. And even when I am managing pretty well and have low stress the migraines do not magically disappear. That's not how chronic migraines work (See my blog post Triggered to learn more) 


*Instead say - "I know that you have had a TON going on lately. Is there anything I can do to help out?" 

It may not be everyone with chronic illness, but personally I am terrible at asking for help when I really need it. One of my girlfriends made our family dinner after I had L and it meant so much to me. 


8) I wish I could nap all the time too, you're so lucky! 

Really? I am lucky to have to lay in bed all the time, in serious pain, missing my life and wishing I could be playing with my kids and doing more? This is not some five star's pain, suffering and constant management. 


*Instead say - "____ can be such a busy time. Have you been able to rest?" 

If they have a chronic illness, rest is important. It is so refreshing to have someone understand that rather than criticizing. 


9) You are STILL ____

Yes, I am STILL getting migraines. It is a chronic disease with no cure- yet. I do things to try and prevent the amount of attacks and the severity, but that doesn't mean I am cured. 


*Instead say - "How are you feeling today?" 

Just a simple check-in that is genuine can change a person's whole day (See my Build Your Tribe Wisely post for more on that) 


10) Just pray harder and God will heal you. 

I am Catholic, I know how to pray, I appreciate prayers being said for me and I have a loving relationship with God. I know that maybe someday I could be healed, and I will keep praying for that (and for everyone suffering) but for right now I know that this is my cross. I feel called to live this life and share with others, bringing awareness, hope and maybe comfort. God performs miracles is His own time, in His own way and I understand that very well. 


*Instead say - "I'm keeping you in my thoughts/prayers." 

Easy and meaningful. It doesn't have to be anything more than that. 










What kind of things have you heard that are hurtful or helpful? 











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