Publisher’s Note
I discovered the article “10 Tips of How to be a Friend to a Chronically Ill Sufferer” on Facebook and found it to be relevant for many MPN patients. I asked Mary McGregor, the author, if I could feature it on PV Reporter and she agreed. I like her self-described “rant” style, it is edgy for sure.
Mary is married with 2 young children. She lives in Colorado where her passion is photography and volunteer work with a local rescue. She suffers from Chiari, Lupus, POTS, Ehlers-danlos, Chronic pain and Fatigue and various other chronic illness pot luck disorders.
This is a timely discussion, as another excellent article on similar subject matter was just released “Things You Should Never Say to Someone Who Has Cancer.”
10 Tips of How to be a Friend to a Chronically Ill Sufferer
by Mary McGregor
I always see 10 things to not say or do to a friend with Chronic Illness. Many of the points are valid and very true. However, for someone who goes through life with a chronic illness/pain, those points are common sense, and we get frustrated that other aspects of our relationships are never addressed. So, I figured I would educate you with my own list of what to do and not do, what to expect, and how to react. Or at least my list that I have figured out over the past number of years of dealing with my own Chronic Illnesses.
1) NEVER tell a person who suffers they are whining or complaining too much.
This usually deals with the newly diagnosed friends and family. During the first few years, patience is appreciated. You will talk about every appointment, every new medication and medication failure. You will know every test result and you will experience the panic of your friend/family member having to wait 2 months for an appointment. You will hear the ‘drama’ that they are certain they are going to die. You will hear many, many emotional break downs. My advice to you? Shut your trap and open your ears. While you may feel that they are being overly dramatic and you are tired of hearing about it every time you talk, you need to stop and remember what it must be like to live it. The fear, the uncertainty, their entire life changing. Trust me on this. During this time we lose many friends. However, it is those friends who understand that this will end and stick around, they are so valued.
Give it a year or two. Eventually a pattern of life will emerge. Eventually we figure out how to do this and what to expect. Ironically, however, do not believe that just because you are not hearing about it anymore that they are better. They are not better, and in actuality, probably worse. We just get tired of hearing about it and hearing ourselves talk about it and we get to the place that we see no gain emotionally, or physically in discussing it. Can’t change it so why discuss it??
2) Stop with the medical advice. Seriously.
You have no idea how annoying that is. Don’t tag us on facebook in some new parsley smoothie can heal kidneys. Don’t send us medical literature or that latest study, or a wonderful new miracle drug. We truly understand your heart is in the right place but please be understanding here. Chances are, we have tried it, taken it, read it, etc. We have been dealing with our illness and pain every day, 24/7. We have experienced first hand the desperation of just wanting it to end and googling any possible measure. We finally realize that there isn’t a magical pill or some great and glorious smoothie that is going to ‘fix’ us. We will never be fixed. We live life in a series of ‘today is my better and I’m grateful for that because tomorrow I may not move’. We see doctors, lots of freaking doctors. We take drug cocktails that would kill a horse and yet we still live on. We are extremely strong emotionally and physically. We have to be. If it was so easy as logging onto facebook to see that meme that declares ginger will cure diabetes and it actually works, we would not need doctors, the hand full of medication, and all the other hoops we jump through. If parsley smoothies cured kidney failure, there would be zero need for dialysis and people would not be dying from it. Just stop.
3) I do not need to hear about your grandmother’s niece’s friend’s sister-in-law that has the same disorder….
and somehow manages to carry a full time career, a family, keeps an immaculate house and still is able to climb 14ers, party with friends on the weekends and take those romantic vacations with her spouse, not to mention those gourmet meals she cooks for her children nightly. I am truly happy for her. Really I am. It must be absolutely wonderful to have a condition that is mild and not life altering. For the rest of us who suffer from moderate to severe conditions, we don’t need to hear “how come you can’t work? So and so does.” We know our limits and many times we push past them from the guilt we feel and place on ourselves. Guilt would be easier to avoid if friends, family and society didn’t place it on us. If it was ok for us to spend a week not moving. Not because we’re lazy, but because we just can’t. We put such burdens on ourselves that we don’t need your help to make us feel subhuman. We feel guilt over if we’re being a good mother, a good father, having to quit work and cutting the family income in half. The stress we put on our family members, spouses, children, friends, etc. is substantial. If you want to be supportive, than understand that we are where we are. Accept us for the place we are in and do not compare us to others.
4) We appreciate your help. Seriously we do. But our idea of help is different than your idea.
Healthy people take for granted their seemingly limitless energy. Little chores you do daily and not even think about, we must plan and tackle that shit like we’re going into the next world war and the entire fate of the planet rests on our shoulders. You are able to wake up in the morning and go about your day without wasting one second and manage to do everything you planned. We wake up with our goals for the day seemingly simple. For example, if I manage to finish just one or two things on my ‘want to do list’ I call it a great day. Please note I said WANT to do list and not TO do list. For us, there is a HUGE difference. We WANT to do a lot of things. But we can want in one hand and crap in the other and we’ll tell you which one, for us, fills up faster. So instead of advice, instead of insisting we need to get out of the house and ‘kidnapping us’ to go out, come over instead. Sit with us while we are unable to move from the couch. Fold that basket of laundry or maybe clean the kitchen. Bring us a meal, or a movie to watch with us. Time spent is more valuable then advice or getting us out of the house.
5) Don’t get offended if we have not contacted you in weeks or months. Talking takes an immense amount of energy.
Social interaction becomes a task. The dread we feel when we’re invited some place is overwhelming. many of us have actually developed Social Anxiety. We often have to cancel last minute because we just can’t make it, and if we do manage to go some where, we typically always have to leave early. We love you. We really do. We value our relationships with our friends and family, however, it does take energy and if we go quiet it is only because we need time. Time to deal with whatever is going on with our health. Sometimes we are dealing with a lot emotionally, we need to digest and decompress what ever is going on. Sometimes we just don’t have the energy to interact. It isn’t that we are mad at you, don’t like you anymore, you haven’t done anything to warrant it, so please be understanding and know that when we contact again, in our mind, no time has gone by and we will pick up right where we left off.
6) Stop looking at us like we’re wounded animals on death’s bed and maybe we could stop acting like we are.
It pains me every time a friend or family member looks at me with pity or worry. We’re fine. Seriously we are. For us, this new diagnosis is just another day. Just because it’s a new issue, it isn’t a new routine for us. By this time, we have a stack of diagnosis that contains just about every illness, or issue known to man. (Or at least it feels that way) Many of us have a list at minimum 20 diagnosis deep. We have learned to just keep going. The world doesn’t stop because we’re sick. We don’t have the ability or time to allow our world to just stop either. When we have to deal with your guilt and your fears, it is exhausting and adds another level of crap we just don’t have the energy or time to deal with. If you are having a hard time dealing with our issues, please speak a therapist.
7) If at first you don’t succeed try, try again.
I typically hate that expression. My train of thought is, if you don’t succeed at first then dump that plan and figure out a new way to make it work. However, in dealing with us, we appreciate you trying, and trying again. If you call and invite us somewhere and we decline, don’t cross us off that invite list. Next time we may be able to make it. If we cancel at the last minute, understand it killed us to do so because we most likely really wanted to go and feel horrible in canceling. This also applies to you asking if we want company. We will almost always say no. NOt because we don’t want to see you, it’s because typically, we are in our jammies, our homes are a mess, we probably haven’t showered in days and the mere thought of having to entertain someone is enough to put us out into a 4 hour nap. When you do come over, being able to just sit and not talk while not feeling awkward with pauses of silence, being able to look past the hot mess we got going on and laughing over silly things will make us say yes to you coming over more often than not.
8) If you are getting overwhelmed in helping and listening to us, please just don’t disappear.
We totally understand the emotional toll our medical disorders places on our friends and family. Please let us know that you need a bit of a break so you can refresh yourself. We understand, seriously we do. IF we could take a step back we absolutely would! We would prefer you to take a step back and refresh than to burn out and we lose you from our lives forever. A note to those who are chronically ill: If a friend says they need a break, it will hurt to hear that, but understand as well where they are coming from and give them the space. A friendship is about give and take and sometimes we need to give that space so we can take their support.
9) Do not judge the state of our house when you walk in.
It may be an absolute pig sty to you, but for us, who perhaps just spent whatever little energy we have in picking up a bit or doing some dishes, it is an insult. We’re proud as hell at the little things we managed to do each day. Instead of saying, “this look like you could use some help in here” (which we hear: You are an absolute lazy sloth who lives in utter filth and doesn’t have any pride) say instead, “WOW! Looks like you managed to get some things done! I have some time today, can I help you so you don’t wear yourself out and end up down for the next three days?”
We hear: ” HOLY CRAP!!! Look at everything you did today! AMAZING!! WAY TO GO!! LETS CELEBRATE!!”
10) STOP already with the “it could be worse”….
“God doesn’t give you what you can’t handle”, “what doesn’t kill you makes you stronger”. Here is our point of view:
Could it be worse? Absolutely! WE are fully aware of that. But for us, in our life, today, this is worse. So please understand that.
I’m not even sure I am handling what I am going through very well, seriously, I’m just kinda barreling through the day, falling over my own feet (quite literally) and praying that if I wake up one more morning than I am doing good. So this saying is just super annoying to us. Annoying enough to take great restraint in not having a slap reflex.
