Friend and Family Support of Chronic Migraineur and other Invisible Diseases
Last updated: May 2023
This is my first post, so a nugget of info about me.
-I've been suffering from CM for the last 20+ years. but the last 6 have been about 25 out of 30 days a month.
-I've been on disability for 5 years
-prior to that i had a thriving career in Healthcare
So this is a deeply personal post for me, so I’m sorry if it’s a little to much for you…I’ve had a lot (medically) going on lately. CM is not my only health issue but it is on the top of the list, it demands full attention! I haven’t felt i was in a good place to write, but with the encouragement of my husband he said this is the perfect time to write! And so over the past few day I have tried to put this together when I can think with some clarity. So here we go:
In my experience, even when you’re perfectly healthy the majority of the population struggles with support from family and friends. When you’re sick you would expect that those family and friends would rally and come together to love and support you.
And some do, initially, they all want to help, however understanding what we go through on a day to day or in my case hourly can frustrate even the most loyal friend and family members. I am not normal, I am not dependable, I cannot make plans because I never know how I will feel, if I do make plans more often than not i have to cancel. I feel horrible for this, but i cannot control it. At first everyone says they understand, they say 'let me know what they can do' but then the calls and texts slowly start to disapate and then stop completely.
For me, this is sad, frustrating and yes makes me pretty mad. When i was healthy I was helping as much as I could. Everyone swears up and down they will be there for you. If I think about these people or relationships lost I spiral into a pretty dark place. And of course I don’t dare to cry or ’stress’ because my already daily migraines will only get worse. But the stress of abandonment from friends & family often results in a trigger or weeks long migraine.
I know my loved ones mean well, however, they are as tired as I am (albeit in a different way) year after year of sitting in the hospital or in the ER. Driving me to more doctors appointments than I can count and all the worrying...so much worrying. Like many of you, I have more than just chronic migraine’s (as if thats not enough) I have not been able to work a job that I adored for many years and I have had more than 14 procedures/surgeries/hospitalizations in the last 2 years and sadly did it mostly by myself with a little help from my wonderful hubby and daughter when they are not working. And where was my family and friends....?
So for all of you that are going through this or something similar I’m sorry, I understand feeling let down, but look how strong you are doing it all! And to those friends and family members, we need you more than you know. We are not the best company, sometimes we can't even form a complete sentence but we do need you, even if your just sitting next to use. CM is a disease, we are in pain, yes our head hurts but so does our body, we have memory issues, need help making decision, cooking, I could go on....
I hope someone out there can relate and I’m not talking to a black screen ? Thanks for reading
~The Migraine Chronicles
In the past year, has insurance made it difficult to get your migraine treatment?