You have a friend or a loved one that has a chronic illness, or maybe it is yourself. Either way we need ideas for how to help. Chances are you have asked, tried, worried yourself into a frenzy and can even get frustrated in trying find ways to help. I was going to look up tips on the web, and then decided to stick to what I have learned through experience. You will find a lot out there. I hope my personal insights will help you.
In the beginning you are given an overwhelming amount of info. You barely get whats happening, let alone your loved ones. I remember coming home that first day from my Dr's office after confirming it was MS. I had just a few hours before I would be hooked up to IV's for a strong dose of steroids and I was still unclear on what multiple sclerosis even was.
All I heard was blah blah blah...something is wrong with your brain...blah blah blah....no cure....blah blah blah....it can get worse! Oh my gosh we were all in shock. I thought maybe had early menopause, maybe a sinus infection, but no such luck, I have something wrong with my
BRAIN! My family gathered round like I was going to die. Phone calls were made, prayers said, and tears shed. I didn't know who to call, or where to even begin and wondered what was my life going to be now. It seemed like overnight that my future was
not going to be the future I had planned.
Tip #1, It's Gonna Be OK. Don't act like they are deaths bed or tell them stories about the latest story you heard of someone that died from an illness like yours. I was once asked "how do even get out of bed in the morning? Isn't it just so depressing?" Umm no, I still look forward to my day, it may not be what it used to look like, but I happily get out of bed. Chronic illness makes life more difficult, but not impossible. It can lead to complications but most of us live a long life. So that's what I'm planning on.
Tip #2, Ask questions. I love it when people ask me questions about MS, education is the best way to get the word out. In 2015 I was on a panel of Mothers With Chronic Illnesses. Included mothers with Fibromyalgia, Chronic Pain, and Chronic Back Pain. I was stunned to learn all that they go through on a daily basis. I learned so much from each of them and how they cope. There are websites for everything, I encourage you to seek them out. You will find info on symptoms, causes, drug therapies, and support groups.
Tip #3 Do not send the latest and greatest cure. Chances are we have gotten the emails, and seen all the social media posts etc. If you insist, do some research first. Not all articles are current or factual. My MS was not caused by drinking Diet Coke, a tick, or even lack of sunlight. Although I would like to use it as my reason for having to live on the beach someday. Rubbing on a $50 bottle of a plant oil may help me sleep better but it can't replace the drug therapies my doctors have prescribed me. And that cure they are doing over in Europe, there are reasons we aren't doing it in the US. I do love emails and texts that simply say "thinking of you, have a great day." PS I'm drinking my Coke Zero as I type.
Tip #4 Communication! I realize what a struggle it is to "know" what a person with a C.I. even needs. So I suggest some preemptive actions. Get a list of what your loved one could use help with on a "bad day". Have medical info on the fridge with Dr phone numbers etc. My kids know after my weekly shot, I'm sick for a day. My 13 year old is often on soup duty, my 16 yr old makes sure I have medications and my husband checks in on me now and then. In the beginning it didn't run that smooth. No one was checking on me, I was too sick to move and often angry that no one even cared! I would sob in the dark, under my electric blanket. Sad picture right? Then I realized I hadn't communicated what I was going through and what I needed. After a family meeting and a few lists, we got it down. Communication is key.
Tip #5 There will be times they don't want help. That's ok. It's hard to lose any amount of independence and adjust to limitations. It takes time to figure out where you need to ask for help and what you can still manage on your own. I often need someone to drive, but how I hate it! It has been one of the hardest things to get used to. So if they don't want help, its ok to back off. Do what you can to make their lives easier. Just letting them know you are there is comforting.
Tip #6 Find Support. Chronic Illness can be very lonely for spouses and for the individual. Maybe even more so for the spouse. They can't actually
feel what it's like, they can't cure it and can feel left out of the process. It is easy to fall into the trap of doing it all on your own. There are support groups out there. Even if its just a phone call. I recently went to lunch with a lady that had been newly diagnosed because a friend had given her my name (with permission). One of the first things I did after being diagnosed was get my puppy. Not everyone is a dog person, but pets can bring emotional support. I didn't want to be alone. After 5 years my little Yorkie has learned when I'm not feeling well. If I'm too cold, he can sense it and curl up on my lap to warm me up.
Tip #7 Humor is good. It's good to laugh about the craziness of it all. I have issues with memory. Did I really just forget my dogs name? Poor thing. Ever seen 50 First Dates?, some days it feels just like that. One night I asked one of my kids to say family prayer, only to find out they just did. I have learned to laugh and let it go. Hope somebody prayed for my memory. :) Which brings me to my next tip.
Tip #8 Stay positive. I know some days that seems so hard! Its true, watch what you say. Making comments like "you already said that" or "I already told you..., don't you remember?" Control that urge to be frustrated out loud. Just make sure comments don't shame or guilt them. Some sleep a lot and it can't be helped. Statements of how long they've been in bed will only add to the guilt they already feel for not having the energy to get it all done.
On the flip side-Relapses and bad days can put a strain on any relationship. Be kind to the person that is trying to support you. They are doing the best they can in circumstances that are often unpredictable.
Tip #9 Give yourself permission to not do it all. Chronic Illness or not, this is a good habit to form. It took me a long time to not have mom guilt and go through that evil list in my head that runs through everything I
should have done. Now I make a list of what I
did do.
Tip #10 Fill this one in by commenting below.
I hope you will add your comments, make more suggestions and reach out. Not everyone's experience is the same.
