Migraine Support System
A "Migraine Support System" sounds great, where can I get one and how do they work?
There are online communities, patient support groups, social media platforms (hit me up on Insta, fam - @invisibly_enhanced), etc. to join.
Supporting people with chronic pain
Migraines aren't cut and dry, "get well soon" cards don't apply. Sending flowers, organizing community meal drop offs, fundraisers, the things kind people do to uplift loved ones who go through unexpected trauma don't really apply with chronic pain. Sympathy is okay but empathy goes a lot further with someone who has chronic pain.
Put yourself in our shoes
I find the most supportive and helpful people to be the ones who don't try to fix all that is wrong, but instead those that just listen. Without judgment, without a list of things to try, without disbelief, just take their time to listen and put themselves in your shoes. It brings me back to the golden rule, something we learn during our early years, "Treat others the way you want to be treated". If you were debilitated with pain, what would you want from a friend?
Sending cards that say "thinking of you"
Making time to call or text. We have a lot of time on our hands, unlike our busy friends we don't get to go to work or assume a normal work week. If your migraineur isn't able to work, drop them a line during the day. I usually only talk to my grandma during the daytime.
Small gifts to show you care
There are times my week is consumed with doctor appointments. Looking forward to something out of the routine would be nice. Send them a small item from their Amazon list; like an ice pack, essential oil, or heat pad to show them you're thinking of them.
Open communication about needs and expectations
In order to have the support system that I have today, I have worked hard. It is key to communicate how you expect that person to be there for you. Being clear in your expectations to yourself and to others is helpful. I have found that I carry anger or resentment that someone didn't read my mind and anticipate my needs. Which in retrospect, when the pain subsides is actually crazy of me.
Asking for help
I have learned to swallow my pride ask for help, instead of expecting others to realize I am struggling and impose with their idea of "help". Sometimes asking for help feels like defeat. You know that older grandparent, or stubborn loved one who sighs in pain and smiles... isn't that something to desire. NO, it's not. Don't learn from earlier generations, from manner rulebooks that instruct not to impose, not to whine, not to be negative or to take from others. Just be real and honest. No one wants to be a burden, so if that is how you feel make an adjustment. You either feel that rightfully or because someone if causing those feelings, or because you feel personal guilt. Adjust accordingly.
Create boundaries and focus on the healthy relationships
If the people in your life do not understand that you need support, it is up to you to change that. Explain to the people you depend on what your needs are and how your feeling, if they aren't empathetic, then within your power, change that relationship. Create boundaries and outsource your support. When someone proves unreliable and to not be an opening for your needs, do not repeatedly disappoint yourself by returning in desperation. Start finding other people to be supportive, and find ways to support yourself. I created my support system by communicating my needs and expectations and implemented boundaries on relationships that drained me emotionally without contribution to the positive in my life.
How much has your migraine disease changed or evolved over time?